In need of advice - Update: Norman will be crossing the Rainbow Bridge

[NoonelovesmelikeNorman]

Hello, my name is Sharon, I have two puppies - Norman a 12 year old dachshund 24 pounds and Millie, a 13 year old yorkie pooh 6 pounds. A recent break-up, shortly thereafter a move, plus a tumble down a staircase created some problems for Norman. No one loves me like Norman, my mother came in a close second. Anyway, Norman started urinating as soon as he was let out the door, two steps and peed a river. He also had four urine accidents within a week. He went to the door and before I could say you want to go out, he went in front of me. This happened also with my ex BF. I knew something was wrong as Norman as he also started to drink excessively. I took him into a new vet. Loved them...they did a through exam; stool, urine sample and blood work. The vet did discussed possibilities,also mentioned that if it was cushings she wouldn't put her dog through the treatment as it is expensive and hard on the animal. Well all testing came back it looked more like cushings. (results below) I suffer from RSD/CRPS, a painful neurological condition and am on SSD ( not much income to work with) so I was grateful when the vet explained this before we knew it was cushings. However, Norman is happy and relatively active, I can not take him on long walks like he was used to with my ex BF. I walk along with him in the yard. I researched cushings on the computer as Norman's excessive water consumption and frequent urination continued. I found a supplement supraglan and ordered it as it had rave reviews. Some days and nights were better but I also noticed she was eating dirt weeds and the roots and he recently just had a tooth break out of his mouth. Norman also searched outside for any water, mud, rainfall puddles, etc. Recently, he has been wanting to go out more and more often and waking at night to go out. A real problem for me because of the medication I need to take for my neurological condition to help with sleep. I am at a loss, looking desperately for some alternative to help ease the symptoms. I can't put the one who loves me like no other down. Where do I get melatonin and Flax Husks? and how much do I give him? Please help me and I thank you for having this site...God bless you! I do not have the $600.00 for the actual testing and inital Lysodren treatment. I am looking for natural ways and hoping I can afford them....I just am not ready to put the one who loves me more than anyone down. I am alone most of my day, my family doesn't understand my medical condition and I am not able to go out because of fear of being touched and pain. I would appreciate any suggestions to help my Norman. Thank you!
ALB 4.3
ALP 879 high
ALT 239 high
AMY 460
TBIL 0.4
BUN 15
CA 10.7
PHOS 6.5
CRE .05
GLU 122 high
NA+ 146
K+ 5.2
TP 6.7
GLOB 2.3
QC OK
HEM 0
LIP 3+
ICT 0

[NoonelovesmelikeNorman]

I also forgot to mention Norman has had an enlarged heart (no surprise to me with all the love he gives me) for a few yeras now. He is on a half tablet of furosemide 12.5 mg twice daily.

Moderator's note: In order to complete your registration, you need to check your emailbox (or spam folder) for a communication from us. Once you respond to that email, your membership will be finalized, and anything that you post will become visible on the the forum immediately. Until that time, your replies must be manually "approved" by a staff member before they are visible to the public -- so there may be a bit of delay between the time that you write your replies and the time that you actually see them.

If you have already received and responded to the confirmatory email, please be patient. Your registration will be finalized shortly…Thanks!

Also, I merged this post to your original Thread so that all information about Norman is in one place.

[Harley PoMMom]

Hi Sharon,

Welcome to you, Millie, and Norman! So sorry for the circumstances that brought you here but so glad you found us.

Cushing's is one the most difficult diseases to get a confirmed diagnosis for because other non-adrenal illnesses can create false positive results on all Cushing test and not one test is 100% accurate at diagnosing this dratted disease. Also, other health issues such as diabetes and thyroid problems share some of the same symptoms as Cushing's.

With Cushing's the initial expense is during the diagnostic phase. After a confirmed diagnosis treatment can begin and the cost does drop. The two most Rx's medicines that are used to treat Cushing's are Lysodren/Mitotane and Trilostane/Vetoryl. One can have these medicines compounded which can be a huge cost-savings.

I wish I had better news to tell you about the supraglan. Supraglan will not lower a dog's elevated cortisol which is the problem with Cushing's disease. So please do not waste your money on this product.

Melatonin and flax hull are the treatment for a dog that has Atypical Cushing's. Atypical Cushing's is when one or more of the sex hormones become elevated but the cortisol is not, so right now, if it were me, I would wait on buying these products too.

Does Norman have a ravenous appetite, pot bellied appearance, or any hair-coat issues? Has the increased drinking/urinating just started recently or maybe after he started the furosemide?

Please know we will help in any way we can so do not hesitate to ask any and all questions.

Love and hugs,
Lori

[NoonelovesmelikeNorman]

Thank you Harley!

I am so grateful I have found a support site.

The testing the Vet did orignially did not indicate diabetes or thryroid. I don't have the extra funds for the extra diagnostic treatments as I am alone and on an extremely tight budget. Not able to work, on SSD, I live penny to penny. My will to live would be gone if I had to give my dogs up since I had them as puppies. I don't have the initial $500-600 to confirm diagnostics and begin the treatment that is why I am looking for alternative treatments.

Surpraglan seemed to have made a difference initailly. Some nights he slept through the night or only woke up once. I can handle that, but now it isnt working so I won't reorder.

I picked up some Melatonin and Milk Thislte plus some remedy product. I don't know where to get the flax hull or I would have picked that up as well. I don't know if Norman has atypical cushings or not. I won't have the money for the diagnostic testing so I may never know.

Norman's appetite is not as ravenous as it was most of his life. He has been on the furosemide for about three years. the excessive thirst/excessive urination began this Aug/Sept. He is always serching for water or anything to drink including his own urine. Not waiting unti he reaches grass. Two steps out the door and he goes. He has had a toyal of five accidents since Aug. He has had the pot bellie appearance and his hair/coat is thinning for some time 6 months maybe. I just thought it was because of his appetite.

I wonder if I should give him only one does of the furosemide. My old vet said it would be alright but it would shorten his life span. maybe he would not have the other problems though??? I don't know, I do know I can't keep going with him waking me throughout the night, however, I just can't have him put down because I he wakes me up. He never left my side through my cancer treatments and truly loves me more than anyone on this Earth.

Thank you for your support and any information/suggestions you may have. Sharon, Norman and Millie

[NoonelovesmelikeNorman]

Thanks again Lori! I am wondering if I can post a picture of Norman and how to do that? I am so grateful for this site, thank you and everyone invovled. As Norman's condition evolves I have a feeling I will feel the strength to do what it best but hope that will be far in the future and that I learn and am able to help others as I learn. It is a true blessing. Peace and gentle Hugs, Sharon

[mytil]

Hi Sharon and welcome from me too. I am sorry you and Norman are having these troubles.

Lori has started you off nicely. I did want to add that if your vet does not want to put him through any treatment, I would find a new vet. Many dogs live out their normal lifespan even with Cushing's with proper treatment and monitoring. It could be that your vet has no experience in this. Are you near a teaching vet facility? This could offer a cheaper way to go through the diagnosis process. One cannot diagnose Cushing's with just a blood panel and the symptom of increase urination and water consumption. There are several addition tests that need to be done (LDDS, ACTH and an abdominal ultrasound).

There is an inexpensive test that can rule out Cushing's and that is a UC:CR and it is explained further in this link - http://www.k9cushings.com/forum/showthread.php?t=180.

Did your vet say anything about a urinary tract infection?

The results you posted indicate high liver values (ALP, ALD) as well as slightly high glucose levels (122). These could be associated with a number of conditions.

What did you vet indicate could be causing these other than Cushing's.

I know we ask a lot of questions here. But know we are here to help.

Also, here is a link to financial resources that may help you - http://www.k9cushings.com/forum/showthread.php?t=212


Keep us posted
Terry

[mytil]

Oh sorry forget about the photos.

Here are the instructions for uploading an avatar - The picture beside your username.


Go to your "User CP" (upper left corner)

Then, click on "Edit Avatar" under "Settings and Options", put a dot in the little circle next to "Custom Avatar" and follow directions in the box for uploading a custom avatar.

Although you can use an image that is posted on any website, most of us use Option 2 - Upload Image From Your Computer.

Here is a link to our FAQ on albums - http://www.k9cushings.com/forum/faq.php?faq=vb3_user_profile#faq_vb3_albums.

Any troubles in this, let me know.
Terry

[SasAndYunah]

Hi Sharon and Norman,

welcome from me as well :)

I will leave the diagnostic and treatment questions to those much more knowledgeable than me. But as far as being single, having a disabeling condition and having to take care of a dog with special needs, I know it all :)

The first thing that came to my mind, in the sense of practical advise instead of medical, is that I would train Norman to go potty on a litterbox or something like that. That way you won't have to get up in the middle of the night.

Another thing that crossed my mind is...are there vollunteer organisations where you could inquire for some help? Or the church perhaps? If I didn't have some wonderful people that surround me in time of needs, I wouldn't be able to do this either. But sometimes we just don't know such people or they are living too far away. In cases like that vollunteers can be a great place to start to try and get some help...walking the dogs, taking you out for a walk for example, etc.

I live in The Netherlands and things are quite differant here as I understand it but I wondered if you have a wheelchair? That would help you immensely I suppose...

I don't want to pry into your personal business...but if I can be of any help, let me know.

Saskia and Mhina :)

[molly muffin]

Hello and welcome.

I think Saskia has some very good suggestions that could help you. Especially the pee pads. That would help immensely.

There is nothing specifically other than the cushings meds already mentioned that will bring the cortisol levels down. With high cortisol levels comes an increase for their need of water. Just make sure to keep plenty of water available to him and maybe that will help him not search for it in all other areas. Have you been able to monitor what his water intake per day is?

Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Hi Terry, Saskia and Mhina ~

My vet is aware of my financial situation, I am pretty sure that is why they don't want to put him through any treatment but she also mentioned some treatments can be tough on the animal. I wanted to stat the lysodren treatment but cant afford the testing before and the additional tests for monitoring. There is no teaching vet facility near Sheboygan, I wish there was. i think the test they wanted to do was the ACTH, plus the other tests would be around 5 - 6 hundred dollars, that didn't include an ultrasound. From what i have read and saw in pictures, Norman has cushings. They did a urine sample his urine was clear - like it showed nothing - clear. : ( they checked his urine four times within two weeks.

The vet said the other tests go along with a dog suffering from cushings as it puts stress on the liver and kidney function with all the water intake. When I brought him in he was drinking about 12 cups of water a day...I have that down to between 3 to 4. But he still has to go out so often. he does well when I go to the pool or an gone for a few hours, he doesn't have accidents in the apt. He is such a good boy. But when I am home he is at the door ringing the bell, scratching at the door and whining numerous times.

After examination and urine checks along with the blood work indicate it is most likely than Cushing's.

I am so grateful for any communication, questions and help. Being alone, with not much if any family support. they don't have time for me, much less Norman. So thank you all for what ever advice you can offer.I will check out the financial resources.

I put Norman in a cage with a blanket last night after the second time waking me. He whined and barked quite a bit but after a few hours he calmed down and whimpered at times. I got up at 6 am and took him out. He, along with the blanket and pad were loaded with urine. I carried him outside and he did go and then i placed him in the tub. The water was just yellow, so I rinsed him and then refilled the water to bathe him. He whimpered when I dried him off.

My church helped me with getting into my apt. and help going to appointments, my dog is not a priority to them and I have been given a lot of help recently with the break up and move on my own.

Since he was a puppy, Norman has been trained to ring the bell and or bark to go out. I just moved into this apt. that is why I tried the cage. I know he had a difficult time holding until he know longer could. I am not sure how to attempt to train Norman to go potty on a litter box.

I have been trying so hard to find advocates to help me with my injury and all the legal stuff that goes alone with that. I have been trampled by so many people over the past almost 5 years. I wouldn't know who else to ask to help volunteer to inquire for some help? I really don't have a strong support system. I feel very alone.

I don't have a wheelchair or walker, I wouldn't be able to do the wheelchair because of my injury repetitive movement is so painful, that is why I do as little walking and when I do it is guarded. I can't take the dogs for a walk because of the pulling of the leashes. CRPS is an awful life altering condition. it has taken so much functioning, and livelihood away from me. I go to a warm water pool almost daily, if I keep my neck under the water the pain, spasms and other symptoms lesson while I am in the water.

Thank you so much for the support and encouragement. Peace to you all.

Sharon

[NoonelovesmelikeNorman]

Thank you all for the warm welcome and good wishes,

I am goin to put down some pee pads...but how do you get them to go there?? only there??

My vet wanted me to minamize the water intake, so should I or not? Maybe just make sure I give him some every couple hours and then stop a fe hours before bed???

************************************************** ***

Sharlene, you wrote:
"Molly 9 yr old shih tzu mix, diagnosed cushings 26 June, 2012 based on high ACTH, high ALP, high ALT, discovered to be misdiagnose in August 2012 after ultrasound (which could be consistent with cushings) and an LDDS where she suppressed the entire 8 hours." So did Molly have cushings or someting else? what is LDDS what was suppressed for the entire 8 hours...sorry I am confused.

I am on facebook but don't skype, twitter, text and those other options to connect...my brain kind of gets confused easily so many meds and being a guinea pig with having this RSD/CRPS.

Thanks again for all of the support. It means so much to me. Love from Norman, Millie and me.

[NoonelovesmelikeNorman]

I am having problems adding pictures of Norman and How do I add contacts/ friends?

[frijole]

I bought pee pads off of Amazon.com. I started off with the paper ones but switched to the cloth ones that are washable. They are called Pooch Pads and I googled them and you can get them at multiple places so check prices for cheapest.

YOu need to have more than one obviously but dogs will learn to use them and you do not smell the urine when they are absorbed for some reason. They come in different sizes depending on the size of your dog. Hope this helps. Kim

[Boriss McCall]

hi!
From what I have learned on here it is bad to restrict water from a dog with cushings.
Welcome to the group.

Amy

[frijole]

I'm SOOOO glad Amy mentioned it... I forgot in my quest to find the pee pads.

The way that cushings works is that your dog is NOT peeing because he's drinking too much - he is peeing as a result of the cushings and he must drink to not become seriously dehyrdrated and so having water is very very important.

Heck maybe the best solution is to put diapers on him. He absolutely cannot control his desire for water and it would harm him to withold it. I saw a 'how to' video on making doggie diapers out of baby diapers (hole for the tail)... Kim

[molly muffin]

Hi, for adding pictures, you should be able to go to your User CP, edit avatar and just browse to add an picture. Alternately, you can go to pictures/albums and create an album for Normal and upload pictures from your computer and they will be automatically re-sized. (i think this is correct anyhow)

No do not withhold water, they really need the water to stay hydrated and with cushings, high cortisol for any reason, they Need the water.

Not sure how to get them to go on the pee pads.

The LDDS is a test that is given over an 8 hour period, with an initial draw and then another at 4 hour and 8 hour. If there is a pituitary tumor then they should not be able to suppress for the full 8 hours. Others can explain the dynamics of how it technically works better than myself, but molly did suppress completely for the 8 hours which should signify that she doesn't have a pituitary tumor type cushings. However, she did have very high ACTH test results, so she does have cortisol levels high in her body. Whether this is a beginning early stage of cushings or something else we are unsure of at this time. She'll be having some more blood work done this week to see if the Heppato supplements I am giving her since the high ALT and ALP test results came back are helping or not. (diagnosis molly at this time is unknown)

Sharlene and Molly Muffin

[StarDeb55]

Here's a late welcome from me to you & Norman! Everyone has given you some great advice, so I will not repeat. I did want to suggest that you might want to talk to the vet about a trial run of Anipryl for Norman. It is the medication normally used for canine cognitive disorder, but is also used to treat cushing's. Unfortunately, anipryl is only effective in about 15% of our pups as the lesion in the pituitary gland must be in the pars intermedia for anipryl to be effective. I'm suggesting it as it is less expensive than the other 2 meds, & doesn't require the regular monitoring ACTHs that the other 2 meds do. You can also get anipryl through a compounding pharmacy which will save you even more $$$.

Debbie

[NoonelovesmelikeNorman]

Thank you everyone for the advise. I have been measuring out his water and not allowing him to drink as much as he feels he needs. I feel like a terrible mom right about now. Thank you for setting me straight on that.

I will ask about a trial run of the anipryl. I have to try something or I will have no choice and it is breaking my heart. I have been in tears all day researching everything that has been advised. I get overwhlemed easily and dont navagate through sites very well, so I thank you all for your patience as well.
Where would I get the anipryl through a compounding pharmacy. I dont know anything about compounding pharmacy's either.

I did try to contact the assistance sites, many our closed due to lack of funds but I did find one and have begun that process. I am filled with gratitude for all of the help I received from this site.

Thank you for the support...I can't even express how much the knowledge you all have shared has helped me feel there is some hope for Norman to be a part of Millie and my life for a while yet at least.

Praying for all of your animals to be granted mercy and peace.

Bless this site and all of you. Sharon

[NoonelovesmelikeNorman]

Sharlene, you said Molly was misdiagnosed with cushings...what did she actually have as an accurate diagnosis and was it treatable and reasonable in cost?

[StarDeb55]

http://www.diamondbackdrugs.com/

A lot of members have used Diamondback. I have used them for a number of years for meds for many of my pups. They have great customer service. I'm pretty sure they ship anywhere in the country for a flat rate. I will tell you that I know absolutely they can compound anipryl for you as my Lhasa that I lost in August was on anipryl for suspected canine cognitive disorder. There are several other compounding pharmacies that other members have used, so I'm sure others will offer their suggestions.

Debbie

[molly muffin]

I think you get a prescription from your vet for the anipryl and then either your vet or you call it in to Diamondback. Give your vet a call and see what she thinks about treating with anipryl and if she'll give you a prescription for it.

Molly does not yet have a diagnosis. She'll be getting some more blood work done this week. I am loath treat since she doesn't have all the typical symptoms, (not over eating nonstop and not over drinking of water) and since she did suppress on the LDDS. We'll see where to go from here. Right now I'm giving liver supplements from the vet and we'll see if that has helped her liver values or not. Molly is our work in progress furbaby.

It is easy to get overwrought with this going on and your feeling like there is no where to turn for help. Just remember that the more you know about this whole situation the more in control you'll feel and the better able to make decisions you'll be. Right now this is all very new to you, emotions are normal, this is an awful thing for anyone to have to go through.

Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Oh sorry forget about the photos.

Here are the instructions for uploading an avatar - The picture beside your username.



Here is a link to our FAQ on albums - http://www.k9cushings.com/forum/faq.php?faq=vb3_user_profile#faq_vb3_albums.

Any troubles in this, let me know.
Terry

Hi Terry, I still can't add any pictures, but it shows I am not allowed to download attatchments, maybe that is why?

[molly muffin]

Okay, I see that you have two albums created for normal, open one of them and within the album at the bottom, it will say, Upload Pictures. Click on that and then you'll be taken to a new page, with 3 slots that say browse next to them. Browse onto your computer and click on a photo and open it. That selects it and then on the webpage with the slots for the pictures, choose upload. It'll automatically resize, so don't worry about that part.

Sharlene

[NoonelovesmelikeNorman]

Iv'e tried that twice..but will try it again...sure would like everyone to see the 12 year old "puppy" that loves me so much and like wise I love him as well. Thanks!

Another ? - Can we allow too much water? Any suggestions...like 6 oz every so many hours our something?

Aslo has anyone tried rescue remedy? if cortisol is related to stress this is for stress relief.

Exhausted!!!! But my neohew came to drop off a larger crate for Norman, he even stayed and visited for about a half hour...so i wasnt alone all day today. = ) He said 'he couldnt believe either of my dogs were 12 and 13, that Norman sure didn't look ill. But did mention the panting and he did want to go out several times while he was here to go potty and eat snow

[Boriss McCall]

I can't wait to see pics of you baby. :)

With cush dogs you do NOT want to withhold water. They are drinking because they need it.

I just put a full water bowl out every morning & never let it go empty. I measure how much he has had to drink everyday to keep track of changes.

[NoonelovesmelikeNorman]

Thanks Boriss McCall...I am going to try to load pics again.

I am gone to the pool for a few hours almost every day for my RSD/CRPS so I will give him more in the morning before I leave, tehn make sure is out and emptied as much as possible and then when I come back.

His thirst is unbelieveable...he would drink 3 cups at one time if I had it out.

Although, His appetite has decreased compared to what it used to be...he has replaced that with water. Anyone, notice a differnece in timing of eating and sleep?

Thank you! and Thank you All!

[NoonelovesmelikeNorman]

I can't wait to see pics of you baby. :)

With cush dogs you do NOT want to withhold water. They are drinking because they need it.

I just put a full water bowl out every morning & never let it go empty. I measure how much he has had to drink everyday to keep track of changes.

Hi Amy! I am so stressed and not great at navagating on any site...medications I am on dont help. I respond to everyone by their pets name...sorry. But I did succeed in getting some ics of Norman posted...I love your little Borris, He looks so spunky! So happy he is responding to treatment.

Another question for all.... About how much do all these tests run, should I ask for an ultra sound, biopsy, ACHT test what should I be asking my Vet to get a complete check up and maybe get it included if i get a grant. Thanks again...this site is so helpful, reading adn comparing others situations, I know, unfortunately, alone on this journey of a puppy with cushings. My dogs may be 12 and 13 but they will always be my puppies.

Wishing all of you a peaceful night with are animal loves close by calmly and happily resting.

[molly muffin]

I'm in Canada so my cost and yours probably wouldn't be the same, but I found the ultrasound to be the most expensive.

One thing is that you do tests in stages. Test, get result, do next based upon results of first.
This is a poll of cost for LDDS in the states: http://www.k9cushings.com/forum/showthread.php?t=1158

This is poll of cost for ACTH in the states: http://www.k9cushings.com/forum/showthread.php?t=1148

You can find other information too in the home of that section found under Polls: http://www.k9cushings.com/forum/forumdisplay.php?f=28

You are doing fine on the site. I just saw the pics you posted of Norman. Quite a handsome little fellow.

Sharlene

[Boriss McCall]

Just saw the pix. Norman is a cute boy!:D

Honestly we have spent a bundle on Boriss this year. :eek:
He has had so many test! I would say since the summer we have spent about $500 a month on getting him regulated. We are finally on a break were we only have to purchase his meds every 30 days. They are about $150 each month. This disease is not easy or cheap to treat. I wish we had more options. :(

[NoonelovesmelikeNorman]

Hi, for adding pictures, you should be able to go to your User CP, edit avatar and just browse to add an picture. Alternately, you can go to pictures/albums and create an album for Normal and upload pictures from your computer and they will be automatically re-sized. (i think this is correct anyhow)

No do not withhold water, they really need the water to stay hydrated and with cushings, high cortisol for any reason, they Need the water.

Not sure how to get them to go on the pee pads.

The LDDS is a test that is given over an 8 hour period, with an initial draw and then another at 4 hour and 8 hour. If there is a pituitary tumor then they should not be able to suppress for the full 8 hours. Others can explain the dynamics of how it technically works better than myself, but molly did suppress completely for the 8 hours which should signify that she doesn't have a pituitary tumor type cushings. However, she did have very high ACTH test results, so she does have cortisol levels high in her body. Whether this is a beginning early stage of cushings or something else we are unsure of at this time. She'll be having some more blood work done this week to see if the Heppato supplements I am giving her since the high ALT and ALP test results came back are helping or not. (diagnosis molly at this time is unknown)

Sharlene and Molly Muffin

Hi Sharlene, please let us know if the supplements (Heppato) helped Molly Muffin and if so where you purchased them. Were they expensive?

Sharon, Norman and Millie

[NoonelovesmelikeNorman]

http://www.diamondbackdrugs.com/

A lot of members have used Diamondback. I have used them for a number of years for meds for many of my pups. They have great customer service. I'm pretty sure they ship anywhere in the country for a flat rate. I will tell you that I know absolutely they can compound anipryl for you as my Lhasa that I lost in August was on anipryl for suspected canine cognitive disorder. There are several other compounding pharmacies that other members have used, so I'm sure others will offer their suggestions.

Debbie

Debbie, I am so sorry for the loss of your Lhasa. Thank you for the site info. Sharon and the pupps

[molly muffin]

Molly is having tests done while I am away this week. So I won't be on the forum till next week and I should be able to let you know then if they helped or not. I got these from my vet. There is a supplement in the states that is the same thing under a different name.

Sharlene

[NoonelovesmelikeNorman]

Norman had his ACHT Test: A friend felt bad for me as Friday was my 5th anniversary of the assault which left me with RSD/CRPS a neurological condition and has taken my livelihood away so he gave me the money to have Normans ACHT stim baseline and 1 hour test done. cost $160.00. The vet called today to say they have confirmation of cushings....I think she said he started at 47 and went up to 53 but didn't have paper to write that down. I will share the actual results when I get them.

She suggested two options, First would do something to the adrenal gland, actually destroy the adrenal gland , Mitotane - It would cost more initially $150.00 and then he would have to be tested and take a pill once a week, therefore cost less in the long run. Second was Trilostane at about $95.00 a month one pill a day. She didn't mention dosage amounts.

What is the best drug to put our dogs on?? Lysodren, Trilostane or Mitotane??

And then the supplements - What about Lignans For Life - Pure Flax Seed Hulls or just Flaxseed Hulls, Melatonin, I also read Dandelion is suppose to be good for the liver /cushings?? Where do you get them from? and what about cost?

What has worked for your pet? Suggestions please....
I am going to try to sell and return items to pay for his medications...Some way I will provide for him...Anyone buy meds online cheaper than going thru the vet office...opinion on that as well please. Thank you so much! Love, Norman and I = )

[NoonelovesmelikeNorman]

Hi Sharon,

Welcome to you, Millie, and Norman! So sorry for the circumstances that brought you here but so glad you found us.

Cushing's is one the most difficult diseases to get a confirmed diagnosis for because other non-adrenal illnesses can create false positive results on all Cushing test and not one test is 100% accurate at diagnosing this dratted disease. Also, other health issues such as diabetes and thyroid problems share some of the same symptoms as Cushing's.

With Cushing's the initial expense is during the diagnostic phase. After a confirmed diagnosis treatment can begin and the cost does drop. The two most Rx's medicines that are used to treat Cushing's are Lysodren/Mitotane and Trilostane/Vetoryl. One can have these medicines compounded which can be a huge cost-savings.

I wish I had better news to tell you about the supraglan. Supraglan will not lower a dog's elevated cortisol which is the problem with Cushing's disease. So please do not waste your money on this product.

Melatonin and flax hull are the treatment for a dog that has Atypical Cushing's. Atypical Cushing's is when one or more of the sex hormones become elevated but the cortisol is not, so right now, if it were me, I would wait on buying these products too.

Does Norman have a ravenous appetite, pot bellied appearance, or any hair-coat issues? Has the increased drinking/urinating just started recently or maybe after he started the furosemide?

Please know we will help in any way we can so do not hesitate to ask any and all questions.

Love and hugs,
Lori

Lori, Norman's appetite has gone down, thirst and urniating way up, loss of hair on stomach behind ears, legs and pot bellied. Today he is just crazy with the water and going out. It is raining so he wants to drink the water outside and urinate.

Normans ACHT stim baseline and 1 hour test done. cost $160.00. The vet called today to say they have confirmation of cushings....I think she said he started at 47 and went up to 53 but didn't have paper to write that down. I will share the actual results when I get them.

She suggested two options, First would do something to the adrenal gland, actually destroy the adrenal gland , Mitotane - It would cost more initially $150.00 and then he would have to be tested and take a pill once a week, therefore cost less in the long run. Second was Trilostane at about $95.00 a month one pill a day. She didn't mention dosage amounts.

What is the best drug to put our dogs on?? Lysodren, Trilostane or Mitotane??

And then the supplements - What about Lignans For Life - Pure Flax Seed Hulls or just Flaxseed Hulls, Melatonin, I also read Dandelion is suppose to be good for the liver /cushings?? Where do you get them from? and what about cost? Are they worth it?

What has worked for your pets? Please give some suggestions. How many times do we need to have the ACTH test done...How soon can I expect to see a decrease in thirst and urnination?
We were out at least 15 times today of not 25.

The worst part for me and not getting any sleep at night. Norman is trained to go out so he will go by the door and ring the bell and bark. If in a cage he will bark almost all night..whine and finally urinate all over himself...I only did that one time...no sleep that way either and it was humiliating for him and I felt terrible.

I am alone and would appreciate any suggestions Please.

Norman's Mom

[Harley PoMMom]

You can get the Cushing medication compounded and that does save some money. Many members use Diamondback Drugs: http://www.diamondbackdrugs.com/

What your vet has the most experience using is very important when deciding which Cushing medication to use.

[Harley PoMMom]

And then the supplements - What about Lignans For Life - Pure Flax Seed Hulls or just Flaxseed Hulls, Melatonin, I also read Dandelion is suppose to be good for the liver /cushings?? Where do you get them from? and what about cost? Are they worth it?



I would not purchase any of these supplements.

[NoonelovesmelikeNorman]

Thanks Lori, Any suggestions for sleep for Norman and me?

[frijole]

I agree with Lori - the holistic drugs don't work with the type of cushings Norman has. Your only choices are lysodren (which is the same drug as mitotane) or trilostane (which is the same drug as vetoryl).

The compounding place Lori mentioned is used by alot of members here and is less expensive.

Regarding sleep - sorry... I can however tell you that once cushing's is controlled Norman won't have to go out at night! So then you can sleep. Until then... it won't get better. He is peeing because his body is dehydrated due to the cushings. He needs every bit of water he is drinking. Control the cushings by reducing cortisol and then he can be just fine.

Kim

[NoonelovesmelikeNorman]

I agree with Lori - the holistic drugs don't work with the type of cushings Norman has. Your only choices are lysodren (which is the same drug as mitotane) or trilostane (which is the same drug as vetoryl).

The compounding place Lori mentioned is used by alot of members here and is less expensive.

Regarding sleep - sorry... I can however tell you that once cushing's is controlled Norman won't have to go out at night! So then you can sleep. Until then... it won't get better. He is peeing because his body is dehydrated due to the cushings. He needs every bit of water he is drinking. Control the cushings by reducing cortisol and then he can be just fine.

Kim

Kim, Which of the drugs is easier on the dog? Less side effects? Does one work better than the other? How does compunding work? So even if Norman wants to drink 2-3 cups of water at a time every three hours, I should allow that ? How often do we have to have the ACTH test done?

Thank you!

[NoonelovesmelikeNorman]

Lori, what type of cushings does Norman have...I know someone said there were three types but what kind does he have? How can I tell?

I will be starting the medication that doesnt destroy the andrenal gland next week when it comes in. Is that the best drug for his type of cushings?

Is there any way to connect with owners who have had the same type of cushings with there dogs?

I am so exhausted, crying all the time, lack of sleep, concern for Norman, Millie was sick one day as well. Alone, fearing losing my Norman. I read so many positives from other threads... I, though dont have the hundreds or thousands to spend. My vet hasnt done as many tests as some have posted, financially, most likely why. i just want the best treatment for Normans type and to get it started and hopefully see positive results soon after at least for a couple weeks at a time.

[frijole]

:D Great questions! The drugs work differently but seem to be equally effective. Both of them, just like aspirin, can cause problems if you give too much. Vetoryl/trilostane is probably the easiest to use since there is no 'loading stage'.

I never used compounding so I can only say that from reading here that some compounding places are dishonest and the product is not the same quality but others are just fine - that is the one that was linked earlier by Lori. Perhaps someone that has used them can help you with your question.

Yes, if he wants 3 cups of water every 3 hours he needs it. The cushings is causing his body (kidneys) to deplete his water and that is why he is drinking and therefore peeing. He isn't peeing because he's drinking. He's drinking because he's peeing! Weird huh?

The acth test is what measures cortisol. Cortisol is high in cushings dogs and that is why you give the drugs - to reduce it. So the only way to know if the drug is working is to do another acth test to test his cortisol levels.

How many times depends on how the dosing goes. I'd start out at 10 mgs per 10 lbs (the lowest recommended dose) and go for a couple weeks then do the test. If his level is within the desired range you can go for a few months before doing another test. If he's still too high you have to increase the dosage and once again test in a couple weeks. It's the only way to know.

That said - there are ways that vets can save you money on the acth test. One of the ingredients in the test is very expensive and the vet can store it (freeze) and reuse it a 2nd time. It cuts down on costs. I have the instructions on my other pc... will send them later. Hope this helps Kim

[NoonelovesmelikeNorman]

Thank you Kim! A lot of questions answered.

How many times depends on how the dosing goes. I'd start out at 10 mgs per 10 lbs (the lowest recommended dose) and go for a couple weeks then do the test. If his level is within the desired range you can go for a few months before doing another test. If he's still too high you have to increase the dosage and once again test in a couple weeks. It's the only way to know.

That said - there are ways that vets can save you money on the acth test. One of the ingredients in the test is very expensive and the vet can store it (freeze) and reuse it a 2nd time. It cuts down on costs. I have the instructions on my other pc... will send them later. Hope this helps

Is it possible to send the instructions to my sharonromeneskoatgmail account then I can forward that to my vet to ask. I don;t have a printer and most likely won't be getting one with all of Norman's needs.

[NoonelovesmelikeNorman]

Thanks for the info... so much to decifer (sp) Going to try to get some rest as Norman is resting. Thank you...can't wait until next week to start the treatment. Hopefully, by Christmas he'll be sleeping through the night. I am fortunate he wont go in the apt. Only one night we had accidents. He is well trained and holds it at least for three steps out the door.

Peace and gratitude to all of you. God grant us and our puppies mercy with this disease. Love, Sharon, Norman and Millie

[frijole]

I shall email it. It's on a different pc but I will. Kim

[frijole]

I emailed it, hopefully you'll get it ok.

[NoonelovesmelikeNorman]

Got it! I will forward the email to my vet, Norman weighs 23 - 24 pounds how many tests should he be able to get out of a dose?

I so hope they will be willing to do that process. I dont think I sleep at all anymore, just rest. I am so exhausted! Thank God this week the CRPS pain is managable, I cry less.

Anyone research foods that help adrenal gland function or reduce cortisol production?

Norman and Sharon

Thanks again.

[lulusmom]

Your vet should be able to do four acth stimulation tests with one vial of cortrosyn.

[NoonelovesmelikeNorman]

Questions.... Norman 23 - 24 pounds will be starting treatment this week. The T medicine I believe, I don't know the dosage yet. I am going to email my vet the info on freezing the ACTH testing meds for multiple testing. I am also wondering if I should request the dosage be given twice a day right away....Any thoughts ? Is this better because it only has a 12 hour effect? Norman doesn't sleep more than an hour but that is because he wants to drink and go out/urinate. So looking forward to sleep at night and not having to let him out 20 times a day. I pray this starts to work pretty fast without complications...the more I read the more it seems there are so many complications. Also, after I get the first prescription then do I let my vet know about the place to order it online? How is the compound different from what the vet would give me? Sorry for all the questions.


Norman's Mom

[molly muffin]

Normally you start with once a day dosing, in the morning and see how the symptoms do. If they remain highly symptomatic and you notice problems during the night of not resting, still going outside constantly, then you'd look at making an adjustment to the twice a day dosing.

Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Thank you Lulu'smom...I sent the link to the vet. no repsonse today, I called late in the day and the vet was out. no one returned the call today. norman has had some accidents in the apt now. However, his urine is so dilueted i cant smell it and i have heated floors and darl brown carpeting so i cant see where he is going unless i step into it right after he goed.

Sharlene, I also asked in the email about having the dosage given twoce a day because of the12 hour wear off and the lack of sleep...I need sleep so badly...

It seems many of the dogs have recently passed....about how long do teh dogs live after treatments are started? i know every dog is different but just want to help prepare.

Thank you ladies...the encouragement is so appreciated.

sharon and norman

[frijole]

Hello. You might read that cushings dogs live on average 2 years after diagnose but that is false. My girl lived for another 4 1/2 yrs and she died at the ripe old age of 16 1/2 of ... old age. Not cushings. We've had members whose dogs lived 7-8 years.

If treated successfully a dog can live a very normal happy life. It is not a death sentence. Alot of the dogs that have passed recently have died from non cushings illnesses. So don't you worry about that ok?

Kim

[Trish]

Yep I agree, Norman is a doggie not a number.... and numbers are made to be broken so don't let that freak you out, sometimes googling makes you feel worse, I know it does me! Keep the faith xxxx

[molly muffin]

Merry Christmas to you and Normal.
Have a safe and wonderful Holiday

hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Thanks everyone. A lot has happened in the past week. My ex-boyfriend/caregiver over the past 5 years since my assualt had a heart attack. 100% blockage and was taken out of town. He made it through the first three stent procudure to open that artery but has to have three more arteries taken care of. He called me in the midddle of the night to tell me he thought he was having a heart attack. I took him to the hospital and was with him over his time in the hospital....my step dad took Norman...it has been scary...thinking about losing him and Norman. Waiting for the meds from the vet. Trying to take care of Joe and myself, norman and the other puppies...I know it can be worse..it just been crazy....thank you all again for the support. Hoping to start Norman this week on his medication and that Joe makes it through his heat surgeries... Merry Christmas and wishing you all and our puppies a healthy new year, Love Sharon, Norman and Millie

[frijole]

Oh my. So sorry to hear the news. Please know that you do not need to rush to treat Norman. With the stress going on in your life if I were you I'd wait until your boyfriend gets thru the surgeries so you have more time to be home and keep a watchful eye on Norman when he does start the drugs. There is no need to rush treatment so Norman should be just fine. Kim PS Sending prayers your way

[molly muffin]

Oh so sorry to hear of all the problems you've been dealt over these holidays. :( Know our thoughts are with you. Sending super healing vibes your way!

hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

How long does it usually take to get the medication? It has been since the 15th and it still isnt here. What type of things do I need to watch for after Norman starts his meds. He had an accident at Joes house today. Sleep - Norman interupting both of us now, not good for Joe's recovery or me with my neurological condition. Again, I appreciate your support and advice during this challenging time. Hugs from me and kisses from Norman.

[milosmom]

hey sharon ... sorry that horrible panic feeling has grabbed hold of you...we all here can feel your pain.hopefully the meds will be here shortly and norman after a bit will be feeling more like himself.just wanted to let you know that there are many prayers and healing energy sent to you all...wishing you peace...patty (milo)meka xoxox

[mytil]

Hi,

I am not sure how long it takes to get the meds - depends upon where and if it is compounded. You are starting with Vetoryl, right?

If there is a sudden and severe change in him, vomiting, diarrhea, lethargy, contact your vet immediately and you can stop the medicine. Some dogs have a hypersensitivity to Vetoryl. An ACTH test should be performed along with testing the electrolyte levels in this case - even if it is before the 14th day normal monitoring.

The symptoms should start diminishing once the cortisol levels start to drop and it is not immediate as it may take time, but as they drop your Norman may be a bit "off" for a few days until his system gets used to the drop in cortisol. Each dog is different I am afraid to say, and symptoms like excessive drinking and peeing may take a bit.

Take a look at this link - http://www.k9cushings.com/forum/showthread.php?t=185.

I am sure others with first hand experience with Vetoryl will be chiming in shortly.

Terry

[Trish]

Crikey, sometimes it never rains but it pours. Hope you will all be getting some good rest and recovery for all you soon.
Trish xx

[addy]

Perhaps with the holidays, it will take a few extra days. I order Zoe's eye drops from NC and they usually come in 2-3 days, this time it took an extra two days. Call the pharmacy to double check the meds were sent and how and on which day.

Their cortisol can drop like a ton of bricks that first week and sometimes they feel icky until they get used to it. When in doubt, dont give the pill and stay in touch with us. If you are starting on a low dose, Norman will most likely be just fine.

((((((((((((hugs))))))))))))))))

[NoonelovesmelikeNorman]

Thanks again my fellow pet lovers....i am happy to report Normans meds came in today and i picked them up. He is on Trilustane (sp) 20mg 30 count. and the gave me another prescription of I think preidisone (sp) in case he has an adverse reaction.

Plus they did save some of the medication from the last ACTH test so the cost will be reduced or I may not be charged. :) Thank you for the suggestion.

The pills are able to be split she said in case we wanted to go that route. I asked about giving it to him in the morning or evening and she said either is fine so today i gave him half when i got home and tonight he'll get the other half then tomorrow i will give him the whole pill between 6-7 pm - so the 12 hour time period many have talked about will be in effect during the evening. I am hoping he will rest better through the night without having to go out as much. I myself don't sleep well because of my neurological RSD/CRPS condition. The stress of my daughter, grandson, Joe and Norman is overwhelming.

But Norman has his pills. My daughter will be having surgery on Jan 7th to remove her ovary (same day I was told I have Ovarian cancer 4 years ago) and the surgery itself will be covered by someone?? My Grandson will be having surgery on the 8th and going to Children's Hospital on the 16th. And Joe, well he is recovery from his heart attack and 3 stent 100% blockage and is eating healthy while we wait until he has the other blockages taken care of...we go to Grafton for a consult on the 4th.....January is full.....But it looks like Norman will at least have some medication to help him have a better quality of life and all of us in his life will have the joy of having him in our lives.

Thank you for your support, encouragement, blessings, and advice.

Two questions?...Do you think I should split the pills right away or start off with the full dose once a day? At night?

Sharon

[NoonelovesmelikeNorman]

Another question...is it ok for me to give him the melatonin and the trilustane?

Wishing all of you (and your pups) a happy and healthy New Year!

With lots of good sleep and rest! ;) I am sure looking forward to A Lot of good news and better health for my loved ones and myself.

With gratitude and love,

Norman's mom

[labblab]

Hi Sharon,

I'm so glad to hear that Norman's medication has arrived, and I wish you strength in the face of so many medical challenges confronting your family in the coming days. I'm afraid I can't advise you re: the melatonin as it is not a supplement that I ever used with my Cushpup.

But as far as the trilostane, let me ask whether Norman's meds are in pill or capsule form. Since you've been told they can be safely split, I am hoping that they are pills. Splitting capsules is a much dicier prospect, and the manufacturer of brandname Vetoryl capsules has published specific warnings against opening capsules and trying to manipulate the contents. So unless you tell us otherwise, I'm hoping Norman's trilo is in the form of pills. If so, for monitoring purposes, you will want to dose him either 10 mg. twice daily or 20 mg. once in the morning -- not once only in the evening. This is because the monitoring ACTH tests must be performed 4-6 hours after dosing with a meal. As long as Norman gets at least 10 mg. in the morning, the ACTH results will be accurate. But if he has not taken any medication since the evening before the day of the test, the results will be skewed and of little value.

So having said that, since Norman is so restless at night, I think it would be fine to start out with giving him 10 mg. both morning and evening rather than giving the whole dose in the morning.

Marianne

[NoonelovesmelikeNorman]

The trilostane are in pill form. I will give him the 10 mg. twice daily so it shouldn't interfere with the monitoring ACTH tests that must be performed 4-6 hours after dosing with a meal. I don't want the tests to be skewed so i will give Norman 10 mg. in the morning with his morning food at 6 am. and then between 5 - 6 pm. His test is at 11:30in 14 days so hopefully the ACTH results will be accurate. Since Norman is so restless at night, I am going to also give him 6mg of melatonin as well, unless someone has other advice regarding that. I am so looking forward to positive healing energy to surround Norman and the rest of my family.

I also didnt think the price was too bad, I think it was 86 for the trilostane pills (30) and about 5-10 of the other was about 10. I was so grateful. I recommend my vet place to everyone, they treat your pet as a family memeber, which they are.

Thank you Marianne

All thoughts and prayers over the next few weeks will be appreciated.
thanks so much. Peace!

Sharon

[molly muffin]

Dearest Sharon, What an ordeal you are going through right now with your family and Norman. I do hope though that at least Norman now will be better controlled and you'll all be able to get some rest. Crossing fingers!

hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Dearest Sharon, What an ordeal you are going through right now with your family and Norman. I do hope though that at least Norman now will be better controlled and you'll all be able to get some rest. Crossing fingers!

hugs,
Sharlene and Molly Muffin

Thank you Sharlene...ordeal is a good way to explain what is happening, but at least getting Norman his medication and that will help with getting rest, which is so much needed with the added stress. I am trying to live in the moment and going with the flow.

Give Molly Muffin a big snuggle of love from Norman and me.

Peace, Blessings and Happy Healthy New Year to ALL...

[addy]

Melatonin and Trilostane- Zoe was originally on melatonin and lignans. Our IMS would not let me continue the melatonin when we first started Vetoryl. She said it can also lower cortisol. Some of our members received the okay to use melatonin with Vetoryl from the late Dr. Oliver from Unn. of Tenn Knoxville. I also checked with our pet pharmacist and he checked for any drug interaction and said I could use both. I did not for the first year but recently because I know Zoe's cortisol is not anywhere near too low, I have been giving her 3 mgs at night before bedtime. It helps her sleep longer.

I just thought I would pass that info on to you. Hope things settle down, you have had such a time of it.

[jrepac]

I also used melatonin and lignans (but I was not treating w/vetoryl, I was using anipryl). I found it eliminated the nighttime restlessness that often afflicts cushpups. I was dealing w/my baby barking at 2:30am...maybe in part due to hunger, hard to say. But, the melatonin pretty much eliminated that behavior.

Good luck w/the trilostane treatment; I hope Norman starts feeling better soon!

Jeff & the Girls

[NoonelovesmelikeNorman]

Thank you addy and jrepac... I am giving Norman the melatonin. He woke up only once last night about 2:30 am and then again a 6 am. The last two days I gave him the full dose in the morning...however, I think I am going to split the dose like I intended on doing. and then also give Norman 3mg melatonin early evening and then before i go to bed. Maybe he will sleep through then???

I am happy Norman slept as well as he did, however, I did not fall back to sleep after the 2:30 potty break, it seems like, every time I wake up and move Norman wakes up, so I try to lay still hard to when in pain...so much going on. With my RSD/CRPS good sleep doesnt happen and I dont remember when I last had 6 hours straight sleep, much less 8.

Again, I can not thank all of you enough for the support, prayers and advice. Thank You!

Sharon and Norman

[Boriss McCall]

Hope you & Norman get a better nights sleep tonight. We used the melatonin for our older pup when she stopped sleeping all night. It really helped her a lot. She started getting solid sleep after a few days on it.

[molly muffin]

Happy New Year to you, Norman and family.
Health and Happiness.

Cheers,
Sharlene and Molly Muffin

[windy]

Before spending a lot of money on tests for Cushing's, I would first make absolutely sure that your dog does not have diabetes. A blood sugar of 122 is kind of high. This could be elevated from Cushing's, or from diabetes. Does your vet have a meter or did they do a blood test using tubes?

They can do a Hemoglobin A1C to get an average blood sugar for the past 3 months, or you can feed your dog and then find a way for his blood sugar to be tested one hour after eating. Meters are not expensive (One Touch has a mini meter for $12.99) and one vial of strips will cost you $25. Try testing him by pricking his tail (sample lancets usually come with the meter) at different times of day, as well as right after a meal.

Cushing's can also affect blood sugars, so the "differential diagnosis" can be tough, but if it is diabetes, you can treat with insulin. I guess that a rise in blood sugar tied to food would be suggestive of diabetes, as opposed to Cushing's, but I would leave that to others who are more knowledgeable, including a vet or others here who are experienced. I am brand new here too...but have been dealing with diabetes for 20 years in a kid and about 8 years in my dog.

[NoonelovesmelikeNorman]

Windy, would the ACTH test come back positive with cushings if it were diabetes?

Trying to get caught up on what has been going on with the other pupps on the site...sorry I am not on as much with my own health and other family members health issues.

Norman is still waking up at night - usually twice. I split his meds. 10 mg in morning and same at night. I also give him 6 mg of melatonin at 6 pm and right before bed.

Norman has started to have accidents in the house again, even though he isn't begging for the water like before and his water consumption is down. He dosent go into the Vet again until the 11th for his ACTH retest...I hope they increase the dose to 15 in morning and same at night or 10 am 15 pm. His walking is slowing a bit, he hasn't gone for a walk for some time, but at times moves pretty briskly in the house. He barks with excitement. All the dogs sleep a lot, so I wouldn't say he sleeps any more than them...he is the one who wakes at night to drink and go out.

Here is also an update on the other health issues with loved ones in my family...at least we didnt lose anyone over the holiday's. 2013 is oging to be happier and healthier...I keep telling my self...

Let me start by Thanking the Lord for all the privileges and blessings he has given us already in 2013 and I thank you for your prayers.

I haven't heard anything new so I am assuming Megan (20 yr old daughter) is still scheduled to have her surgery to remove her ovary at Aurora memorial early am Monday. I am four year ovarain cancer survivor.

As long as Oliver (grandson) does not develop another fever in the next day or two he will be having his surgery on Tuesday, early AM at Plymouth Hospital - should be out patient. He was able to sleep through the night and keep his temp. down. Please continue to pray for him - his color is terrible, even his eyes don't look right. Hopefully, this surgery will take care of his health issues. Children's Hopsital over booked on the 16th so that mean he has to wait until the 23rd to go to get further immunology testing.

Joe (ex bf - caregiver) went yesterday for his follow up stents. He will not have to have by pass. For his surgery, Dr Wiesman will be using stents on 2 arteries and check the third and possibly use a stent as well, if necessary, will be Tuesday afternoon at Aurora Grafton. There is a sigh of relief that he does not have to have bypass. According to Dr. Weisman, if all goes well, he will be able to return to work within a week of this procedure. Joe has made a conscientious effort to change his eating habits, reading labels, avoiding many unhealthy foods.

Grateful for every day, everyone we love and care for are able to remain here with us. Thank you for your continued prayers. Also, I am ever so thankful for the warm water pool /sauna to help relief the RSD/CRPS pain/spasms and just relax that allows me to develop the strength to get through and try to be supportive to those in my life. Finally I want to extend my thanks and appreciation to those of you who continue to be supportive of my health, well being and livelihood.

Thank you Lord!

I wish all of you the happiest, healthiest and prosperous year!

Peace and Love,
Sharon

[Harley PoMMom]

Any non-adrenal illness, which includes uncontrolled diabetes, can create false positive results on all Cushing tests.

[NoonelovesmelikeNorman]

Does norman have non adrenal illness? ... So Norman might not have cushings? or he might have cushings and diabetes? When he goes in on the 11th what specifically should i ask for test wise. I know they will be doing the ACTH test and I'll bring a stool sample, he'll probably give them a good urine sample during the visit he has a tendency to do so.

Does treatment for cushings - diabetes change, do you have to give your dog shots...I know I couldnt do that..I would probably inject myself in the process.

Several people mentioned melatonin and lignans what are lignans?

Tired, overwhelmed, confused ...

Thank you Harley poMMom!


sharon and norman

[Harley PoMMom]

From your 1st post, I see that Norman's blood glucose was not that high so I believe that diabetes is unlikely.

Lignans are a group of chemical compounds found in plants and are used with melatonin for dogs that have atypical cushing's. If this were me, I would not buy any lignans for Norman.

ACTH stim test is one test that I would want done, usually a chem panel is done to check the electrolytes.

You're doing a wonderful job, Sharon!

[NoonelovesmelikeNorman]

Thank you for the boost Harley PoMMom...as with all of us at some point, I wonder if I am doing enough or the right thing for my Norman.

It is kind of funny about the chemical compound found in plants...before the snow, Norman was eating plant weeds, even digging down to get at the roots. Not a normal behavior for him, I asked the Vet about that and they didn't have much to say about that.

Have a great evening, thanks again to the boost of confidence...I know I needed it...I'll share with Norman, I am sure he will understand...they are so smart.

<3 Sharon and Norman

[molly muffin]

Hi Sharon,
I'm glad the family is hanging in there and seem to be on a road that is right for each of them. I wish them, each and every one all the best.
Lets see how Normals acth results come back like and then go from there. If he isn't in a controlled area, then they may wait for the full 30 days to see if it continues to come down. That is possible and we have seen it many times here on the forum where there will continue to be a drop past the first 2 weeks. It does sound like he is starting to come down, with the less water drinking, but may not be fully there if still having accidents at night.
As Lori said, you are doing a really good job. :)
hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Thanks Sharlene! It will be nice to have everyone get through the surgeries well and with good results/news. And for Norman to get more positive results from the medication

Norman is so bloated yet, his breathing his stressed at times (He also has an enlarged heart for about three years). Up again twice last night. He has a good appetite, always a glutton with food since he joined the family.

Norman didn't have an ultra sound when I brought him in. Should I ask for one? What would be the benefit? Are they expensive?
How long does it usually take for the meds to help lower the cortisol production? I hope I dont have to wait another 30 days...then they will want another ACTH test and another $160...
How often do you think Norman will need to have the ACTH testing?

Thanks for the encouragement and advice, Sharon.

[Squirt's Mom]

Hi Sharon,

I wanted to share my experience with you concerning the ultrasound and non-adrenal illnesses.

Squirt was diagnosed with the pituitary form of Cushing's based on five different tests - the LDDS, HDDS, ACTH, UTK panel, and ultrasound. After the second ultrasound I was told about a tumor on her spleen. After the tumor and half her spleen were removed, her cortisol returned to normal and remained within normal range for nearly 4 years. The ultrasound saved her life by finding the tumor and proved the initial diagnosis of PDH incorrect. They (U/S) are expensive but as one of our mods used to say - it offers the biggest bang for the buck because it will look at many things.

Cortisol is one of the fight or flight hormones we all have - humans, dogs, cats, horses, etc. It is a vital part of our chemical make up. However, many things other than Cushing's can cause elevations in cortisol as a normal response to any stress, internal or external. In other words, the tumor Squirt had caused her to be stressed so her body was releasing extra cortisol to help her cope. Many pets get very nervous at the vet and this alone can cause the cortisol to be elevated. Any illness can cause elevations in cortisol but that does not mean the pup has Cushing's. This is why it is always best to be thorough as possible in the testing phase and the ultrasound is one test I highly recommend. So many things can cause false-positives on the cush tests. ;)

Hang in there! You are doing a good job for your sweet boy!
Hugs,
Leslie and the gang

[NoonelovesmelikeNorman]

Hi Leslie, Did squirt have any other symptoms to go along with the high cortisol? Norman does have the pot belly, excessive thirst and urination.. Thank you for sharing you information...I am going to check on the price of the U/S and see..it is frustrating not being able to work and earn a living to help my daughter with health problems/in college and then Norman...

One day at a time...

Sharon = )

[Squirt's Mom]

Hi Sharon,

I hadn't noticed any signs, but then I didn't know what they were at that time either. When I started learning about Cushing's she had been displaying these signs which I had taken for simple aging -

*less interactive with her family
*hiding under furniture
*weight gain (but no pot belly)
*panting

I know how hard it is to make ends meet and with a sick pup it just gets harder. I live on disability income which barely covers my bills each month but we somehow manage. It's amazing the things I have been able to do without! :p

Hugs,
Leslie and the gang

[NoonelovesmelikeNorman]

Norman went to the vet today for his ACTH test. Charge $160.00 with a $20.00 discount because they used the same bottle and froze the rest. they have to send it out so the cost is still $160.00, even though i was told they would not charge me for this one.. Oh well.... He needs a higher dose, his 20 mg trilostine (sp) is not working. Might find out tomorrow if they will give him a higher dose. Then maybe he will drink less, urinate less and sleep through the night.

Another FYI - Joe made it through his stent procedures and is doing great, back to work Monday. Dont know about megans ovary biopsy - daughter dosent talk to me much - I was never the mother she wanted me to be. I guess I can say she isnt the daughter I always hope to have either, never forgives the imperfect mom. Oliver is doing alright...hoping he continues to do well and everyone health just gets better and better..including mine and Normans - Sorry for the vent...I need an attitude change...

I am very grateful for this site...your knowlegde and encouragement. I am blessed the past few weeks God came through as he has. Norman is alive and I know I am blessed to have found all of you. Thank you k9cushings friends.
Sharon and Norman

[molly muffin]

We all have that need to vent sometimes and just get it all out. {{HUGS}}

Make sure you get a copy of the ACTH results and post them so we can keep up with what is going on with Norman. Depending on what the results are will determine what a change in dosage might need to be or even not be at this time.

Glad that everyone seems to be doing okay and hopeful for a good recovery for all.

hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

questions for all of you?

Do any of you limit food for your dog or do you allow unlimited food and water?

Norman has always been a glutton with food and I have had to keep the other dogs food up. Norman's food was meausred and he was spot on time with 6 am and 5 pm - to the minute to remind us of feeding...until cushings and now water is most important to him. Then food. His weight was 27lbs for years when I brought him in for cushings he was 23 - 24 pounds, staying consistant so far. I have been feeding him 1 and 1/2 of his cups (old Tide cup).

Also, I did as suggested (by group as the 12 hour time frame)and broke his trilostane in 1/2 morning and evening with food. Dr specailly gave me tablets to do so, but was kind of upset when I asked before bring him in for his second ACTH test.

I havent seen a huge difference, we are back at his home for the past 5years and he seems better as rest, (because of ex's heart attack but he will be going back to work and I should going back to my apt.) but still drinking lots and has to be let out several times at night, panting quite a bit, congested breathing. I have noticed some shaking, but energy level, alertness, mobility are pretty good and consistant.

I have been able to nap as needed with having someone else to let Norman out. Every 45 - 60 minutes was taking a huge toll. so every 2 - 3 hours is an improvement, but some of that was to find plants, drink rain, snow or his own urine...I now know and allow him have as much water as he wants. I feel blessed every day to have Norman with us and being able to manage as well as I am.

Again, I want to thank everyone for the encourage, shared knowledge and support. Thanks for all of the recent prayers for my other family members as well. Thank you for this site... Peace, love, comfort and blessings to all of you.

Sharon and Norman

[addy]

Hi Sharon,

IMO, I would not give unlimited food. Perhaps you can try to give ice cubes or bits of carrots or blueberries, things that wont add to his weight or feed him more frequent meals. I take part of Zoe's breakfast and save it for 4 hours later (not alot of the food) and do the same in the evening.

Hopefully once Norman is on the right dose he wont be so hungry though sometimes some of that is a learned behavior.

Unlimited water- yes, that is a must.

When will you have the ACTH results?

[Boriss McCall]

Boriss & Pearl would be as big as a house if I gave them unlimited food. They just get a little less than a cup in the morning & the same in the evening.

As far as water that is ALWAYS unlimited. I know with Cush dogs you should never limit their water.

[NoonelovesmelikeNorman]

Hello Ladies,

Yes, since joining this group, I have been allowing Norman as much water as he wants/needs. It is difficult to keep track of as currently he is with a black lab and a yorkie pooh, but he is the major consumer.

The test results should come in on Monday and I will be picking them up and will share them with the group.

Norman has been trembling at times. He still is otherwise acting normal. I will give him his food three times a day instead of twice. I will also go back to giving him carrots for snacks. He rests in throughout the day. When anyone has food a snorts to get attention and begs, always scavenging...(I think that is a good sign).

I just wish they could speak to us. I think this is so much harder than when my own mother was dying, although she was 80, had cancer and no quality of life, it was a fast 6 months of decline and she shared with me she had no quality left, she was ready. I don't think Norman has shared that yet, or even know if I should expect to see him demonstrate any signs.

Thank you! May all of you and your pupps get a good nights rest.

Sharon & Norman

[NoonelovesmelikeNorman]

Another questions about timing of medication....If I am splitting the timing of the dosage, should I give it to Norman at bedtime with a little food?..Maybe 9 pm and then 9 am..he seems to sleep / rest pretty well after receiving his trilostane dosage.

Always about sleep...lol ;)

Sorry for so many questions?

Norman's Mom

[addy]

Hi Sharon,

Yes, if they could only talk:D:D:D:D:D

Trilostane should always be given with food so you would want to give it twelve hours part and with a meal of some sorts. When an ACTH test is done, dont let them tell you to fast Norman, the pill always is to be given with food, including for the ACTH test.;) You would be suprised how many vet office get that part wrong;)

[NoonelovesmelikeNorman]

Hi Sharon,

Yes, if they could only talk:D:D:D:D:D

Trilostane should always be given with food so you would want to give it twelve hours part and with a meal of some sorts. When an ACTH test is done, dont let them tell you to fast Norman, the pill always is to be given with food, including for the ACTH test.;) You would be suprised how many vet office get that part wrong;)

Thank you Addy! I did get the info from the group on having norman eat with 4-5 hours of the test and 12 hours apart (thanks group! = D). Norman just had another accident in the house. Walked towards the front door, barked, bent and went. I didnt even get any words out of my mouth before he started going, he finished outside...but definately the Trilostane is not a high enough dose, with this and his high intake of water. Cant wait until tomorrow to get results and increase dosage. I am going to give him the doseage 9am and 9 pm ...I am wondering if anyone else has done this and with what success??

<3 Stormin Norman's Mom

[molly muffin]

Yes a few of our members do twice a day medication. So far so good. It all depends on the dog though as everyone of them is different. However, often you go to twice a day when symptoms don't seem to be controlled for the entire day. Lets see what those results look like tomorrow.

hugs,
Sharlene and Molly Muffin

[SoggyDoggy]

Hi Sharon,

My Fraser is on twice a day dosing and it works brilliantly for us! After a debacle with a GP vet who over dosed him, we saw a specialist, her recommendation was either 30mg once a day, or preferably 10mg twice a day. I went the twice a day option as he is not difficult to give pills to and his last ACTH results came back in her words "text book perfect".

Fraser gets his pills around 7.30-7.30 (maybe a bit later in the am if I happen to sleep in) but always with dinner and breakfast. I am lucky, while he was definitely hungry and used to ask for food earlier, he wasn't demanding it. His brother often left bits in his bowl and Frasy would eat that too. They never used to get breakfast, only fed once a day. There would always be biscuits down for them, but seeing as he left them half the time I figured he wasn't starving.

Now just over a month on twice a day, he is back to leaving half his dinner untouched to go back later for a midnight snack before bed. Even then, he leaves the bits he doesn't like, so his appetite is back to where it was originally.

Another lucky thing for me, he never had an accident in the house. I have a dog door straight out to the yard, it is always open so he can take himself in and out at will. I've noticed I'm back to making him go out before bed again though, so along with the need not to fill the water bowl 3-4 times a day, now I just refresh it 1-2 times a day, he has stopped going out as much too.

Generally, on the twice a day dose, I am seeing a return to the boy I knew a year or two ago. Sometimes I have to remind myself that he is still an old boy and not to let him overdo it, but he is a lot more spritely and alert than he was before. (well apart from the flu he has at the moment, that has knocked him for a six).

Anyway, as for your question has anyone else dosed 2x a day and with what sucess, yes we have, and with GREAT success.

Good luck, let us know how it goes.

[NoonelovesmelikeNorman]

Thank you sharing Soggy Doggy! I am happy to hear the good news on Frazer. I wish I had the option for a doggie door for Norman.

I will do the 12 hour and like your suggestion of 7:30 am / pm.

Although, I dont quite understand the 30mg a day and then 10 twice a day. Norman is on 20mg tablets - 10 twice a day.

Anyway, Happy to hear a long term success story...although I am realizing every day, every moment with Norman is a success to be treasured more than the I already did - Norman, the living thing that loved me like no other on Earth.

Thank you and once again thank everyone who developed this support group. We are not alone when we have each other even through the darkest saddest moments in our lives. This group has helped me through this challenging time which is part of life with man's best friend.

Love, Sharon and Norman

[addy]

Sharon, often a dog will require a lesser dose when on twice day dosing verses once a day dosing:):):)

[NoonelovesmelikeNorman]

I am eager for the resuts today. twice a day dosing didnt seem to help at the 10 mg...hoping they willl allow at least 15 mg twice a day or 10 morning 15 pm... I will share later today/night.

I have appts today and tomorrow, asking for prayers, that the holy spirit will surround me and all will go well.

I have to feed Norman and head off to the warm water pool for therapy.

Peace to all, Wishing all of you a day of comfort and love.

Sharon and Norman ;)

[SoggyDoggy]

Hi Sharon,

The 30/10mg thing is just that some studies have shown that twice daily dosing may be more effective with a smaller dose in some dogs. I was offered 10mg twice daily, 15 mg twice daily if I thought he needed it (I was also enquiring about re-compounding capsules at that point which is why the specialist mentioned the 15mg) or 30mg once daily. I wanted to start lower seeing as how the GP had over medicated Fraser, so I wasn't going to hit him hard again. For us, it seems to have worked brilliantly.

As for the time of day, there is no set time you need to medicate, 7.30 or 9, whenever, as long as it is approximately 12 hours apart and with food. I just dose at 7.30 as it is usually straight after dinner, and I give them breakfast at that time as I usually leave for work just after 8am.

Just wondering, how long have you been dosing twice daily for?

Anyway, good luck with your test results, do let us know!

Naomi.

[Squirt's Mom]

As for the time of day, there is no set time you need to medicate, 7.30 or 9, whenever, as long as it is approximately 12 hours apart and with food. I just dose at 7.30 as it is usually straight after dinner, and I give them breakfast at that time as I usually leave for work just after 8am.

One other consideration with feeding times for a Trilo (Vetoryl) pup - be sure the med is given at such a time that the ACTHs can be done (completed, not just scheduled) within 4-6 hours after the dose. Timing of the dose and testing is critical for Trilo (Vetoryl) pups. ;)

[NoonelovesmelikeNorman]

Results are in...here they are and I don't have an idea of what they mean...although I knew Norman's meds needed to get increased and they are. The vet suggested giving Norman 15mg in the am and pm. I told her I wanted to continue doing the every 12 dosage, she said ok. So for now I am giving him 1/2 of his 20 plus a 1/4 of his 20. ( I broke all of his 20mg in half already. ) They will be ordering 30 mg for me.

If anyone want to decifer - would love to hear from your past experiences and knowledge. Thanks!


12/14/12
Baseline cortisol 4.6 1.0 - 5.0 ug/dl
Cortisol conversion factor is;Cortisol ug/dl x 27.6 = nmol/L

Cortisol 1 hr 51.7
Normal values for the ACth stimulation test baseline cortisol of 1 to 5 ug/dL in dogs and post -ACTH cortisol of 10 to 20 ug/dL in dogs (in 1 or 2 hr post ACTH samples)
Cortisol converstion factor is : cortisol ug/dL x 27.6 = nmol/L

1/11/2013
Cortisol Baseline 6.8 1.0 - 5.0 ug/dL
Cortisol conversion factor is;Cortisol ug/dl x 27.6 = nmol/L

Cortisol 1 hr 17.6
Normal values for the ACth stimulation test baseline cortisol of 1 to 5 ug/dL in dogs and post -ACTH cortisol of 10 to 20 ug/dL in dogs (in 1 or 2 hr post ACTH samples)
Cortisol converstion factor is : cortisol ug/dL x 27.6 = nmol/L

Weight stayed the same 23.6
Administered 0.21 mL Cortrosyn IV (5 micrograms per kg).


Norman's mom - Sharon

[NoonelovesmelikeNorman]

Hi Sharon,

The 30/10mg thing is just that some studies have shown that twice daily dosing may be more effective with a smaller dose in some dogs. I was offered 10mg twice daily, 15 mg twice daily if I thought he needed it (I was also enquiring about re-compounding capsules at that point which is why the specialist mentioned the 15mg) or 30mg once daily. I wanted to start lower seeing as how the GP had over medicated Fraser, so I wasn't going to hit him hard again. For us, it seems to have worked brilliantly.

As for the time of day, there is no set time you need to medicate, 7.30 or 9, whenever, as long as it is approximately 12 hours apart and with food. I just dose at 7.30 as it is usually straight after dinner, and I give them breakfast at that time as I usually leave for work just after 8am.

Just wondering, how long have you been dosing twice daily for?

Anyway, good luck with your test results, do let us know!

Naomi.

Hi Naomi, I have been twice daily dosing 12/14/12. I am wondering if I should try giving norman 10 mg am and 15 pm to start off and then increase or maybe just go with 15mg am/pm like the vet suggested.


Squirt's mom - I read over wuite a few of the post of pups on trilostane and I think it showed better results giving every 12 hours. I also read from the posts to make sure to give with food and within 4 hours of ACTH testing. Thank you! i have learned so much from this site...I thank all of you...I am learning so much about cushiings, what to expect with treatment and how to prepare for the future loss of Norman (as best as possible) i have learned so much, cried, and recieved strength from each of the postings and all going through this with "our best freinds" :D

[NoonelovesmelikeNorman]

Should I be changing my thread name as I post new/ different information so the right people who know more about the questions can respond??, or keep it the same?? i know there is no dumb questions but I feel silly asking?

[Harley PoMMom]

Results are in...here they are and I don't have an idea of what they mean...although I knew Norman's meds needed to get increased and they are. The vet suggested giving Norman 15mg in the am and pm. I told her I wanted to continue doing the every 12 dosage, she said ok. So for now I am giving him 1/2 of his 20 plus a 1/4 of his 20. ( I broke all of his 20mg in half already. ) They will be ordering 30 mg for me.

If anyone want to decifer - would love to hear from your past experiences and knowledge. Thanks!


12/14/12
Baseline cortisol 4.6 1.0 - 5.0 ug/dl
Cortisol conversion factor is;Cortisol ug/dl x 27.6 = nmol/L

Cortisol 1 hr 51.7
Normal values for the ACth stimulation test baseline cortisol of 1 to 5 ug/dL in dogs and post -ACTH cortisol of 10 to 20 ug/dL in dogs (in 1 or 2 hr post ACTH samples)
Cortisol converstion factor is : cortisol ug/dL x 27.6 = nmol/L

1/11/2013
Cortisol Baseline 6.8 1.0 - 5.0 ug/dL
Cortisol conversion factor is;Cortisol ug/dl x 27.6 = nmol/L

Cortisol 1 hr 17.6
Normal values for the ACth stimulation test baseline cortisol of 1 to 5 ug/dL in dogs and post -ACTH cortisol of 10 to 20 ug/dL in dogs (in 1 or 2 hr post ACTH samples)
Cortisol converstion factor is : cortisol ug/dL x 27.6 = nmol/L

Weight stayed the same 23.6
Administered 0.21 mL Cortrosyn IV (5 micrograms per kg).


Norman's mom - Sharon

Norman's pre is 6.8 ug/dl and his post is 17.6 ug/dl. According to Dechra's product insert a dog's post cortisol should be between 1.5 - 5.4 ug/dl and as high as 9.1 ug/dl if clinical signs are controlled.

So, it seems that Norman does need an increase in his dose of Vetoryl. Dechra also states that one should not break open the Vetoryl capsules, do you think your vet could write a Rx for 15 mg capsules to be compounded or even have 5 mg capsules compounded to give with 10 mg Vetoryl capsules?

[NoonelovesmelikeNorman]

Thanks for the response and info...the vet gave me tablet so I could break them if needed...blessed about that as I would not be able to throw out unused meds. I am on such a limited budget and actually grateful for a freind who has help pay for most of everything Norman has had done thus far, or I would have had to put him down and he his not at that point. talk about feeling like a failure as a parent (doggie and human)...I wasn't disabled when I purchased my two dogs now 12 and 13 yrs old. I was assaulted in 2007 and now left with a neurological condition unable to work on ssd, barely making it ...I have lost about 15-18 pound in the past fe months...giving up what ever doesnt have to be paid in order to keep up with what does.

Just doing the best i can with what i have and making the best but difficult decisions as I go along.

Feeling so blessed for this site....I was bawling and crying for weeks prior to finding this site. It has given me hope, strength, understanding and coping strategies...So gratefull...thank you!!!:D:D:D

Sharon - Norman's mom

[NoonelovesmelikeNorman]

Harley PoMMom- Norman appears about half way to Normal? is that right??

According to your post - Norman's pre is 6.8 ug/dl and his post is 17.6 ug/dl. According to Dechra's product insert a dog's post cortisol should be between 1.5 - 5.4 ug/dl and as high as 9.1 ug/dl if clinical signs are controlled.

Where do I find Dechra's product insert? I am confused...

[labblab]

Sharon, if you click on this link, you will find the publication that Lori was quoting from. It is the U.S. Product Insert for Vetoryl (brandname trilostane):

http://www.dechra-us.com/files/dechraUSA/downloads/Product%20inserts/Vetoryl.pdf

As far as increasing Norman's dose, these are my thoughts. The cortisol levels for dogs being treated with trilostane can continue to drop lower through the first few weeks of treatment, even when the dose remains unchanged. For this reason, the makers of Vetoryl generally recommend that the medication not be increased until after the first thirty days or so -- in order for the dog's cortisol level to stabilize at it's lowest point on that dose. If I am correct, Norman had only been taking the trilostane for two weeks when this ACTH test was performed. So everything being equal, I would normally say that if it were me, I'd stay the course for another couple of weeks before making a change.

However, Norman's cortisol level is nowhere near the the desired therapeutic level (which would be below 9.1 with symptoms controlled). Plus, your health and living situation is such that it is really important for you both to gain some symptom relief sooner rather than later. Finally, given his weight of almost 24 pounds, the 30 mg. total (15 mg. twice daily) is really not an excessively high dose. For all these reasons, if Norman were my dog, I'd be good with going ahead and trying the increase to 15 mg. twice daily now, even though I usually encourage people to wait a while longer before upping the initial dosage.

Marianne

[NoonelovesmelikeNorman]

Thank you Marianne for the thorough explanation and the link. All of the input is helping me feel more confident I am doing what is best for Norman. I will update on a day or two how Norman is doing, if I notice any difference in the mean time.

God Bless you and this group,

Sharon and Norman

[molly muffin]

It sounds like you are on the right track, in that the level is coming down, it's just not there yet and you've made the adjustments necessary to get there. It's all a process with this disease and trying to get control of that dratted cortisol.
You really are doing an exceptional job I hope you don't forget that.
hugs,
Sharlene and Molly Muffin

[addy]

Hi Sharon,

If it helps at all, I think Marianne gave really good advise.:):):)

[Harley PoMMom]

Thanks for the response and info...the vet gave me tablet so I could break them if needed...blessed about that as I would not be able to throw out unused meds.

Sharon, I am so sorry for missing that pertinent information about you using tablets and not capsules, I, too, am glad that your vet is helping.

YOU are doing a wonderful job!

Love and hugs,
Lori

[NoonelovesmelikeNorman]

Thanks Sharlene, Addy and Harley....feeling a bit more relaxed, now I just have to be patient and continue to apprecaite every moment with my boy and focus on a healthier 2013 for everyone in my family and myself. Big day tomorrow...a prayer or two would really be appreciated. Thanks! :)

Again, I am so grateful for the knowledge and support this site has provided me to aid in the quality of Normans life. :D

Bless you all!

Sharon

[NoonelovesmelikeNorman]

I am trying to adjust Normans feeding schedule. Later in the morning and evening. And giving him a few pieces of food a couple times inbeween.

Is it common for dogs to sleep after getting their meds?

Today we are at 15 cups of water between 2 dogs - Mostly Norman drinking. But I think that is an improvement. No accidents past two days. I have increased his meds, giving him a 1/2 of 20 mg and a 1/4 of the 20 mg (total of 15 mg in am and pm) until his new prescriptions comes in....always waiting for orders to come in..something I am not overly thrilled about with new vet, (but that is really minor in the scheme of things) I just think he will be getting a more consistant amounts with the new prescript 30 mg split in half. It has only been since Monday, but I still dont think it is high enough. He still is drinking a lot (maybe a little less) but he is also still waking at night at least two times to go outside, even with me giving him melatonin (9 mg) - for is 23.6 weight.

Will I have to get another ACTH test in a couple of weeks or before they increase again? Also, when on trilostane should i notice his stomach getting more back to normal and less pot belly?

Thanks for your patience and support.

I feel for all those who have had to say good-bye to their families best friend and the unconditional love that was given. I thank those who have shared their experiences as I try to prepare, if there is such a thing. This site is so valueable... for every aspect of having an dog with this disease. Sending Peace, Love and Comfort to all of you. Your strength demonstrated in your words is inspiring.

I am not as strong as God beleives I am...I ask him for mercy with Norman, my families health, my own health...and learning how to forgive the boy who assaulted me, my former employer, the people in position to help and (assaulted /injured) emplyee and everyone who had the opportunity to help make a very life altering situation filled with even more injustice instead of trying to help the injured employee heal. I have lost so much since that assault which left me like this which has affected every relationship, including my pets, financail care, physcial care...I haven't been able to walk with the dogs for years...seeing the joy in their bodies as they since the scents and find paths through the woods or lawns....So much to forgive with more and more loss around. Yet with so much to appreciate right here with me NOW.

Thanks for your support over the past couple months. <3 Norman's Mom

[molly muffin]

Remember that it can take awhile on any given dose for all symptoms to clear up. So patience is in order. I know that is hard, but so far it is an improvement. Lets just see how he continues to do. The water intake probably has decreased if he is not having any accidents at night, considering how it was when you first joined here. That's a bit improvement right there. :) You're doing good.

I know it is hard sometimes to find that balance in life considering all that you have been through. It truly is horrible what happened to you and I wouldn't wish it on anyone. The thing is that they really don't Know. They don't know what this has done to your life. They might think they do, but no one can truly know who hasn't walked a mile in your shoes. So what you are forgiving them for might not be what it actually is. You have to forgive them for their lack on knowledge, not for injustice which is much harder to try and come to terms with. Just keep it simple and perhaps then within you can find some peace. I truly hope so. You are a very nurturing, giving person, who is trying the best she can to take care of herself and those around her, including norman.

I think you're doing an outstanding job.

Hugs,
Sharlene and Molly Muffin

[Harley PoMMom]

Will I have to get another ACTH test in a couple of weeks or before they increase again? Also, when on trilostane should i notice his stomach getting more back to normal and less pot belly?


Since this is a dosage increase, if it were me, I would have an ACTH stim test done in about 2 weeks.

It does take some time to see improvement in the pot-bellied appearance. I know how frustrating it can be to not see improvements right away, as this dratted disease does take a lot of patience, which I have not mastered! ;)

Love and hugs,
Lori

[addy]

Is it common for dogs to sleep after getting their meds?

Zoe falls asleep about two hours after her morning meds but at night she will fall asleep for a bit about an hour after the dose. It also sometimes depends on what I am doing. If I am sitting here on the forum, she will sleep but as soon as I get up and head toward the kitchen, her head is up;);) If I am active she does not sleep as much after her meds.

[NoonelovesmelikeNorman]

Norman is very simlar to Zoe, although every time I move much less gets up - Norman follows me every where and then I usually let him outside.

I do have an improtant questions on how and where I can order my own trilostane tablets (not capsles). The dose is suppose to be increased so I have, they ordered the highere does on Monday - Norman will run out of meds on Monday the 21st. I don't think the dose is still high enough as we had another rough night - waking and drinking and having to go outside. I dont want to run out of meds? It just seems it takes a long time for them to get in the meds I would like to order and have enough always on hand. any suggestions from people who have ordered - where? how to price? do I need a script? Any suggestions??

Sharon

[addy]

Hi Sharon,

I order Zoe's eye drops from a pharamcy in NC. They have her presription with refills on file, when I need more refills, they contact the vet, they have a credit card on file and I call in for the refills, they mail them out, allow 4 working days though sometimes the post office gets them here in two, not sure why. But I dont have to worry about a dose change.

Yes, you need a prescription or refills from a vet, you cannot purchase without one as far as I know. So what do you now have for him 20mgs of a tablet that can be split in two and he is currently receiving a total of 30mgs per day, 15/15 right? So if the next increase is to 40mgs, 20/20 you can still order sixty 20 mgs pills for a 30 day supply. You will use appx 14 days worth before testing again to see where you are.
If you end up lowering the dose, you still can use the same pills since they can be split.

At least that is how my flea brain as figured it out but since I worked all day and have not yet had dinner I could be off:rolleyes::rolleyes: Math is not my strong suit, I dont think well with that side of my brain:rolleyes:

[Squirt's Mom]

Hi Sharon,

Be sure to double check that you are ordering tablets and not capsules as the capsules can't be split. ;)

Hugs,
Leslie and the gang

[NoonelovesmelikeNorman]

Leslie, I definately have the caplets that may be split. I am grateful for that.

Addy, I am trying to be patient and thanks for the encouraging words...I guess I do have to admit Norman is much better than not being on meds and has not had any accidents for a few days (knock on wood).

Waiting for the 6-8 hour sleep at night for him. I have been giving him melatonin and that doesnt even seem to be making a differnence he still wakes up at 2 am and 4 am then begs - makes noises from 5:30 for food. I ahve water out at all times.

He is just hungry all the time now, along with drinking a lot. I am attempting to have him eat later in the am and evening closer to 6:45 am 6:45 pm. Giving him a 10-12 pieces of food a couple times in between feeding as 3 times a day didnt seem to make a difference.

At first, my Vet said they would freeze the ACTH medince and not charge me the 160.00 each test. But when I came in for the next test I was given only $20.00 off....I just can't keep haiving the ACTH test every dosage change...I should have some say in that since I do have the pedisone in case he would be overdosed. I hope.

I would like to get the next increase is of 40mgs, 20/20 you can still order sixty 20 mgs pills for a 30 day supply. Like you said but without a ACTH test first.

Although, as Lori has pointed out, I have not given the 15/15 much time for Normans body/cortisol to improve.

I guess with everyones health isssues and my own I am impatient and then the reminder/question is he suffering? I still dont beleive so, just being more hungry is not suffering.
I have cut up carrots to help inbetween as well. Maybe I should increase food more as well..he hasn't lost or gained weight..Very verbal (snorting) glutton when anyone is eating with his nosies and whinningin the morning to eat. I would say his appitite has definately increased with the medication.

Sharlene, thank you as well for the encouraging and understanding words..

God bless you all and the knowledge everyone has shared during the journey we are all on with our beloved dogs.

Gratefully yours, Sharon and Norman

[addy]

I would like to get the next increase is of 40mgs, 20/20 you can still order sixty 20 mgs pills for a 30 day supply. Like you said but without a ACTH test first.

Hi Sharon,

I dont think your vet will agree to this. Have you had a conversation with the clinic about how tight money is and what would be a safe testing schedule for Norman but help stretch your dollars?

The Wisconsin Humane Society has a branch in Washington County. I wonder if they could link you up in some way with help with the costs associated with getting Norman on the correct dose. Does Sheboygan have a Humane Society?

I'll go back to the beginning of your thread.

[NoonelovesmelikeNorman]

Hi Sharon,

I dont think your vet will agree to this. Have you had a conversation with the clinic about how tight money is and what would be a safe testing schedule for Norman but help stretch your dollars?

The Wisconsin Humane Society has a branch in Washington County. I wonder if they could link you up in some way with help with the costs associated with getting Norman on the correct dose. Does Sheboygan have a Humane Society?

I'll go back to the beginning of your thread.

Hi Addy, You mean they would not ever increase without doing the ACTH test??? even if he still has all the symptoms? Yes, we do have a Humane Society i called they said the didnt have a fund to help. I applied for one site and was approved for a $4500 charge card. I am on SSD, poverty limit, have returned items, begged and borrowed so far. Like I said they at first were not going to charge me every time but then the second time they gave me only 20 off. Plus now I have to pay for more meds. Neither dog will be taken in for their shots reg check up because of the costs for Normans cushing tests and meds. I am not good at researching, the Vet knows me situation. Suggestion... sometimes it is time to let go....NOT When he is not in pain, :mad: I should put him down because I cant afford to pay for his meds...How aweful to suggest...at least that is my feeling.

thanks for all the info...I have learned so much from people like you.. Thank you!

sharon

[Squirt's Mom]

Your vet suggested you put him down because of costs??? :mad: That vet wouldn't have sat for a month if it had been me he said that to! :mad:

As ugly as that ^^ would have been, he would be extremely irresponsible to increase the meds without an ACTH. Toooo many things can cause the signs that we see with Cushing's to automatically assume they are connected every time we see them so the signs PLUS the ACTH tell the story - not one or the other, both are required.

I want to be absolutely sure you comprehend how dangerous this drug is. It can be fatal to Normal, it can cause you problems from simply handling it, so it is NOT to be treated lightly.

You may not like to research but if there was ever a time in your life to bite the bullet and research anyway, THIS is it! You are Norman's only voice, his only advocate, his first and last defense so it is up to you to learn all you can in order to help him. As you have seen, our vets cannot always be counted on to know as much as they should about Cushing's so WE have to. ;) Of course, if you have a trap-door mind like mine, things learned tend to fall out every now and then! :p

I am working hard at finding some way to bring in a little more money just for the dogs medical bills to supplement my disability so if I stumble onto a gold mine, I will holler at you and be more than glad to share the idea! I enjoy making things - crafts, beading, ceramics, etc - not to mention the TONS of junk I could get rid of and have been looking at Etsy shops but haven't quite taken the plunge yet! ;)

Hang in there! You are doing a good job in a tough situation. This is a whole new world with it's own language to learn and you are doing great at asking questions - a great way to learn! ;)

Hugs,
Leslie and the gang

[addy]

Yes, Sharon, Leslie is exactly right, Trilostane is a dangerous drug that if used inappropriately, can cause Norman harm and sometimes it can take a bit of dose tweaking to arrive at the right dose.

I dont mean to upset you or have you feel discouraged but I would be concerned about changing Norman's dose without proper monitoring.

[labblab]

Sharon, what explanation is the vet giving you for only discounting Norman's ACTH test a mere $20? If they agreed up-front to freeze the stim agent to give you a sizeable discount, I'm curious as to why they're not holding up their end of the deal? I know the cost of the testing is a huge issue for you, so I don't understand why the vet is not giving you the discount they had earlier agreed to. That could make a big difference in how you proceed.

Marianne

[NoonelovesmelikeNorman]

Sharon, what explanation is the vet giving you for only discounting Norman's ACTH test a mere $20? If they agreed up-front to freeze the stim agent to give you a sizeable discount, I'm curious as to why they're not holding up their end of the deal? I know the cost of the testing is a huge issue for you, so I don't understand why the vet is not giving you the discount they had earlier agreed to. That could make a big difference in how you proceed.

Marianne

They are a new Vet office, they have to send out the test and there are costs for that was what she said why they now could only give me the $20.00 discount. Yes, it is a huge difference on how to proceed. I don't know how long I will be able to afford just to oay for the meds.
I sold most everything I had to move into my apt this fall, my church helped with the rest that I needed. I have been given gas cards, I am on food stamps, I brought back items I purchased for my apt to help with cost so far and borrowed. I am not crafty. I just picked up some medication for myself. Spent $15.00 on a healing service (which I have to say I am able to get touched and hugged on my back without spasms for the past couple of days...well worth the $15.00. ) I will do what I am able, the best I can...I will ...

I hope the Vet has to at least give me the same amount.. I hope.

I did not know this medication is dangerous to me...like I should wash my hands after handling it?

I am a bit overwhelmed and tired...it has been rough few weeks but things are coming together slowly in a positive manner....everyone is alive, tomorrow I will find out the biopsy results from my daughter ovary removal. Norman has shown some improvement, my grandson celebrated his fourth bd this weekend and even though he is still pale he played and I was able to hold him. He like his Christmas /birthday combo gift and book. So much to be grateful for and feel blessed...today is almost done and tomorrow is a new day.

Thank you all for the advice!

Sharon and Norman

[Lauren]

Sharon, I've been reading all your posts and wish I could help at little more. I too am new to Cushings (my Cooper was only diagnosed in November). The costs are quite overwhelming sometimes. I can tell you that I've been researching discount programs and additional insurance for Cooper to no avail thus far. I do have a good ear though, so if you need to vent please direct your posts to me. Cooper is also on tristolane and I know that you must wash your hands after distribution. It is very dangerous. Again, anything I can help with please let me know, Lauren and Cooper

[NoonelovesmelikeNorman]

More Good News - Thanking the Lord for bringing more good and blessings in my life!

I saw my daughter and her mass was not cancerous!! WHOOT HOOOT HOOT!!! :D:D

:o Sorry for venting yesterday, I am blessed :) and this group has been part of my many huge blessings for me and Norman. :D

Thank you!

Sharon

[Squirt's Mom]

:D:cool::D Woohoo!! :cool::D:cool:

[molly muffin]

yay, good news Sharon!!!

Sharlene and Molly Muffin

[Harley PoMMom]

That is great news, Sharon, and I am so happy for you and your daughter.

[addy]

Wonderful news Sharon:D:D:D:D:D:D:D:D

I am so happy for you.

Happy hugs for you


((((((((((((((((((((((((((((((happy hugs))))))))))))))))))))))))))))))

[SachiMom]

First I want to say I am happy to hear that your daughter has good news.

I did not know this medication is dangerous to me...like I should wash my hands after handling it?
But I do not want this to go unanswered in the wake of celebrations. Yes! Yes! Yes. You must be very careful of the drug, especially since I gather that you are splitting them, etc. If possible you should wear plastic/disposable gloves when doing this. Just remember that trilostane is/was a chemotherapy drug for breast cancer (I think). You should use a pill splitter dedicated to those pills - in other words, don't use the same one to split Norman's pill that you may use to split your pills or anyone else's pills. Don't be afraid of the pills, just use caution.

I hope Norman improves soon. It is a very frustrating road. So many ups and downs. But we do what we can for those we love.

Hugs ~ Mary Ann

[SoggyDoggy]

Excellent news Sharon, hopefully just the start of a long good run now! It must Norman's turn for the good part next, so we're waiting with baited breath to hear it.

YAY! :D:D:D:D:D:D:D:D

[Harley PoMMom]

Just remember that trilostane is/was a chemotherapy drug for breast cancer (I think).
I believe, here, Mary Ann is talking about Lysodren.

Lysodren/Mitotane is an oral chemotherapeutic agent. It is also known by o,p′-DDD.

Trilostane/Vetoryl is an enzyme inhibitor. It helps inhibit the enzyme 3-beta-hydroxysteroid dehydrogenase, which is involved in the production of cortisol.





You should use a pill splitter dedicated to those pills - in other words, don't use the same one to split Norman's pill that you may use to split your pills or anyone else's pills. Don't be afraid of the pills, just use caution.
Hugs ~ Mary Ann

I do think dedicating a pill splitter solely for the use of Trilostane/Vetoryl is a really good idea.

[Lauren]

Such good news, now it's Norman's turn!

[Squirt's Mom]

http://www.dechra-us.com/files//dechraUSA/downloads/Client%20Literature/38965_Technical_Brochure.pdf


HUMAN WARNINGS:
Keep out of reach of children. Not for
human use.
Wash hands after use. Do not empty
capsule contents and do not attempt
to divide the capsules. Do not handle
the capsules if pregnant or if trying
to conceive. Trilostane is associated
with teratogenic effects and early
pregnancy loss in laboratory animals.
In the event of accidental ingestion/
overdose, seek medical advice
immediately and take the labeled
container with you.

[Jenny & Judi in MN]

congratulations on the good news for your daughter! I hope you can get something worked out for your Norman

[labblab]

Actually, Mary Ann is right that trilostane has been used as a breast cancer treatment. In fact, it was originally approved here in the US for that purpose two decades ago. But for reasons I don't recall, the FDA approval was withdrawn, perhaps just because the manufacturer did not pursue ongoing certification/marketing here. It is still approved and marketed for human use in the UK. The human brandname version of trilostane is marketed as "Modrenal," and that is the form of the drug that I first imported from the UK back when my Cushpup started treatment in 2003.

I just did a quick Google search, and it looks as though there may be renewed interest in using trilostane for breast cancer treatment. Here's the summary of a 2006 research study:


Abstract
Antiestrogens, principally tamoxifen, and aromatase inhibitors have been used as the first- and second-line therapy in patients with advanced postmenopausal breast cancer for many years. However, some patients acquire resistance to these treatments and, at present, further endocrine treatment is achieved by merely substituting the current medication with a different antiestrogen or aromatase inhibitor. Trilostane offers an alternative endocrine treatment due to its unique mode of action. It is an allosteric modulator of the estrogen receptor and targets both the estrogen- and growth factor-dependent pathways through which estradiol stimulates cell proliferation. In clinical trials, trilostane has been shown to be an effective treatment for breast cancer in patients who have relapsed after receiving treatment with one or more forms of endocrine therapy. Ongoing and future clinical trials are examining the potential for the use of trilostane in premenopausal breast cancer, as well as in other malignancies such as prostate cancer.

http://www.ncbi.nlm.nih.gov/pubmed/17109615

So it is true that trilostane has been used in cancer treatment. This does not mean it is a toxic drug, however (it does not directly attack cancer cells) -- just one that needs to be handled with care due to its potential effects on hormones in humans as well as dogs.

Marianne

[labblab]

Sharon, changing the subject ;), we staffers have been wracking our brains trying to think of ways to help you with Norman's treatment cost. One suggestion we've thought about is the possibility of sometimes performing baseline cortisol readings instead of full ACTH stimulation tests to assess the appropriateness of Norman's trilostane dosing. Baseline cortisols still require a blood draw and analysis, but you are spared the cost of the stimulating agent. I do not want to give you false hope that you will be able to totally discontinue ACTH testing. But you may be able to reduce the number of ACTH tests that are needed.

In the desire to ease the cost/demands of trilostane monitoring, Dr. Audrey Cook at Texas A & M University has been designing research to explore whether baseline cortisols, on their own, can reliably predict safe and appropriate trilostane treatment control. Her results are only preliminary, and she cautions that more research needs to be done. But her initial results suggest that as long as a dog's baseline cortisol falls within a specific optimal range and the dog is doing well clinically, a vet may be able to assume that the trilostane dose being given is safe and effective.

However (and this is a BIG "however"), she recommends that any dog with a baseline reading that falls outside a specific optimal range should still proceed to a complete ACTH stim test before making dosing changes. The ACTH would also be recommended any time a dog is not doing well clinically. Here's a link to the complete study:

http://www.2ndchance.info/cushings-monitorcortisollevel.pdf

Baseline cortisol monitoring may not be a good option for Norman right now since his clinical signs are still not under control and he is still so new to treatment. But a bit further down the road, baseline cortisol monitoring may give you some relief from ongoing ACTH costs. You may want to tell your vet about this study, and your vet may even wish to contact Dr. Cook directly to see whether there have been any recent updates to this research. After hearing about your specific situation, Dr. Cook might be able to give your vet some monitoring suggestions.

I know how anxious you are to see improvement with Norman. But I do encourage you to try to be patient and give him at least a couple more weeks to stabilize on this current dose of trilostane. At that point (and after maybe talking to Dr. Cook), your vet may feel that a baseline cortisol reading can be helpful in assessing how well he's doing on that dose. But I think he needs to have some time to adjust before you consider yet another dosing change. Even if this current dose is still too low, you won't know how much of an increase is appropriate until you can judge the maximal effect of the dose he's already taking. Does that make sense? I hope so! :o

Marianne

[Harley PoMMom]

Actually, Mary Ann is right that trilostane has been used as a breast cancer treatment.

Thank you Marianne for this clarification as I didn't know that Trilostane was/is used for breast cancer.

My apologies to Mary Ann, also.

Ya learn something new every day! :)

[labblab]

Ya learn something new every day! :)
Ain't that the truth!!!! Just when I think I've got something squared away in my head, a new twist pops up and slaps me in the face. :rolleyes:

But in this case, I don't think we've ever spoken much at all about trilostane's "human" history around here, at least not for years. So it would only be the few of us who were importing Modrenal back ten years ago who would know how it was originally used. I just checked Wikipedia, and it says that FDA approval for human use in the US was withdrawn back in 1994; it's been a long time since it was used here in that way. So I'm really glad you brought up the question so we could fill in some blanks about trilo's history. Who knows, maybe it will end up being approved for cancer treatmet here once again.

Marianne

[mcdavis]

Sharon,
have been following your story but without experience haven't been able to add anything, however saw your recent posts about the cost of testing etc. and wondered if there were any alternative vets in the area who might be able to help - not sure if you have more than one vet in your area, but where I live the vet costs vary quite substantially, and the most expensive is definitely not the best!! Maybe you could call around and explain what you need and get some quotes?

[NoonelovesmelikeNorman]

Sharon, changing the subject ;), we staffers have been wracking our brains trying to think of ways to help you with Norman's treatment cost. One suggestion we've thought about is the possibility of sometimes performing baseline cortisol readings instead of full ACTH stimulation tests to assess the appropriateness of Norman's trilostane dosing. Baseline cortisols still require a blood draw and analysis, but you are spared the cost of the stimulating agent. I do not want to give you false hope that you will be able to totally discontinue ACTH testing. But you may be able to reduce the number of ACTH tests that are needed.

In the desire to ease the cost/demands of trilostane monitoring, Dr. Audrey Cook at Texas A & M University has been designing research to explore whether baseline cortisols, on their own, can reliably predict safe and appropriate trilostane treatment control. Her results are only preliminary, and she cautions that more research needs to be done. But her initial results suggest that as long as a dog's baseline cortisol falls within a specific optimal range and the dog is doing well clinically, a vet may be able to assume that the trilostane dose being given is safe and effective.

However (and this is a BIG "however"), she recommends that any dog with a baseline reading that falls outside a specific optimal range should still proceed to a complete ACTH stim test before making dosing changes. The ACTH would also be recommended any time a dog is not doing well clinically. Here's a link to the complete study:

http://www.2ndchance.info/cushings-monitorcortisollevel.pdf

Baseline cortisol monitoring may not be a good option for Norman right now since his clinical signs are still not under control and he is still so new to treatment. But a bit further down the road, baseline cortisol monitoring may give you some relief from ongoing ACTH costs. You may want to tell your vet about this study, and your vet may even wish to contact Dr. Cook directly to see whether there have been any recent updates to this research. After hearing about your specific situation, Dr. Cook might be able to give your vet some monitoring suggestions.

I know how anxious you are to see improvement with Norman. But I do encourage you to try to be patient and give him at least a couple more weeks to stabilize on this current dose of trilostane. At that point (and after maybe talking to Dr. Cook), your vet may feel that a baseline cortisol reading can be helpful in assessing how well he's doing on that dose. But I think he needs to have some time to adjust before you consider yet another dosing change. Even if this current dose is still too low, you won't know how much of an increase is appropriate until you can judge the maximal effect of the dose he's already taking. Does that make sense? I hope so! :o

Marianne

Marianne, thank you for this information. I will be forwarding it to my Vet's office. I will try to be more patient and I am so grateful to see any improvement in Norman.

I also would like to thank everyone for sharing in the great news for my daughter. As you can imagine I am very relieved and grateful. :D

And for all the information on the Trilostane precautions. I have only been home for two days now, trying to get caught up on mail, put away Christmas decor. I was also blessed to have a friend come over to clean and help with the christmas stuff. Nice suprise, blessed indeed.

Thank you all for the prayer, support and suggestions.

I dont think I should any vet costs for the next 3 weeks (hopefully). i am going to call the humane society to see if they do the testing and if they will save the bottle and use only the amount needed for Normans weight. I beleive someone informed me they thought he should get four tests out of one vial. THank you for helping me come up with other ideas to continue to get Norman his medication and treat his cushings as best as possible.

Bless you all!

Sharon and Norman = )

[NoonelovesmelikeNorman]

Anyone in Wisconsin know of a place that does use/freeze and reuse the meds for the ACTH testing? Keeping up with medication is tough enough. Open to all ideas and thank you for all the suggestions thus far.

Sharon and Norman

[jmac]

Sharon,

So glad to hear you're seeing a little improvement in Norman, and for the wonderful news that your daughter's mass was not cancerous. What a relief! I hope the positive news will keep coming your way!

Julie & Hannah

[addy]

I'm afraid I dont know any Sharon. I think you would just have to call local vets and ask about pricing and how they could work with you or revisit it all with your current vet. The Humane Society wont do the testing but may be able to advise you of any possible places that could help with costs, etc.

[lulusmom]

Hi Sharon,

Can you tell me how far away from Sheboygan you can travel if there were a way to get help with Norman's medical expenses? I have a listing of possibilities and want to call around to see if it's even possible so I thought a good place to start would be finding out how far I can send you. The teaching hospital is 112 miles away from you and they have a special fund for low income and disabled but the pet must be a patient there. I'll be happy to do the fact gathering for you but need to know if traveling to Madison is doable for you.

Glynda

[NoonelovesmelikeNorman]

Hi Sharon,

Can you tell me how far away from Sheboygan you can travel if there were a way to get help with Norman's medical expenses? I have a listing of possibilities and want to call around to see if it's even possible so I thought a good place to start would be finding out how far I can send you. The teaching hospital is 112 miles away from you and they have a special fund for low income and disabled but the pet must be a patient there. I'll be happy to do the fact gathering for you but need to know if traveling to Madison is doable for you.

Glynda

Hi Glynda,
I tried contacting UWMadison - I think it was - a Steve Wall who stated that did not have any funds to help me out. I wouldn't be able to go to Madison by myself but I think I could find someone to go with me. I have limited outgoing minutes to use on my phone so calling around is challenging as well. i very much appreciate the help with trying to find someplace that will use the vial according to Norman's weight and freeze it inbetween or just help with any costs for him.

VET ALERT: I think they are messing his meds up. Norman was on 12.5mg Furosemide - 1/2 pill am and pm for about the past 2-3 years. They orginally changed that to 20 mg furosemide - 1/4 pill am and pm. Yesterday the Vet suggested that I skip the eveining pill all together and see if that helps with him not having to wake up still three times a night. That is quite a drop in his heart meds, I understand it is a water pill so, ok lets try it. - didn't make a difference.:confused:

Norman started off with Trilostane 20mg 1/2 morning and 1/2 at night. I changed his eating for later so it would hopefully allow him to sleep more at night.

Norman's
12/14/2012 baseline cortisol was 4.6 - cortisol 1 hr 51.7
1/11/2012 baseline cortisol was 6.8 - cortisol 1 hr 17.6

1/21/11 - I was given Trilostane 20 mg told to break them into 1/4 and give him (3) am and (3) pm is that an increase??:confused:

Norman had an accident in the apt today so it isnt helping. :(

I am not having a good pain day and feeling exhausted and overwhelmed. Thank you everyone!! :D Bless you all!

Sharon and Norman

[Concernedmom]

Hi Sharon and Norman
I've read some of your posts and won't speak to any of your medication issues it sounds like you are in good hands here. I wanted to let you know that when I had a peeing problem with my senior dogs I tried so many things but what did help was the belly band for male dogs. I did read someone mention a diaper in a previous post and believe it or not there is such a thing. The diaper is for the female and the belly band is for the male. You can buy it online or in a pet store. You insert a woman's Kotex pad, put the belt on the dog and he pees on the pad. When wet you remove the pad and insert a new one. It's a good solution for people who have this kind of problem. Of course you don't want your dog sitting in the wet pad so you need to change it when wet but at least you won't have to get up to let the dog outside. The other solution is the pee pads or the pee grass. There is a way to train the dog to go on the pads and grass in the house but its very time consuming. You can find these solutions on the web. The best belly bands to buy are made of fleece and has no elastic. Once you see what it looks like you will be able to make one yourself if you can't afford one. Just a thought. I had my 16 year old male use one from time to time and they do get use to it. I hope Norman starts to feel better. You too.

[NoonelovesmelikeNorman]

Hi Sharon and Norman
I've read some of your posts and won't speak to any of your medication issues it sounds like you are in good hands here. I wanted to let you know that when I had a peeing problem with my senior dogs I tried so many things but what did help was the belly band for male dogs. I did read someone mention a diaper in a previous post and believe it or not there is such a thing. The diaper is for the female and the belly band is for the male. You can buy it online or in a pet store. You insert a woman's Kotex pad, put the belt on the dog and he pees on the pad. When wet you remove the pad and insert a new one. It's a good solution for people who have this kind of problem. Of course you don't want your dog sitting in the wet pad so you need to change it when wet but at least you won't have to get up to let the dog outside. The other solution is the pee pads or the pee grass. There is a way to train the dog to go on the pads and grass in the house but its very time consuming. You can find these solutions on the web. The best belly bands to buy are made of fleece and has no elastic. Once you see what it looks like you will be able to make one yourself if you can't afford one. Just a thought. I had my 16 year old male use one from time to time and they do get use to it. I hope Norman starts to feel better. You too.

Hi there! and thanks for the suggestion. Yes, I have tried the belly band/pad and diaper together, as well as with medical tape. His belly is so big and then his back end narrow, Norman just walks/squirms out of them.

Today, he ragn the bell to go out and barked...I got up right away but he already had started going. (much like before he was on meds) Usually, I have a minute or two to get to him, not earlier.

Sharon

[molly muffin]

At a post of 17.6 his cortisol needs to come down some more I think.

hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

At a post of 17.6 his cortisol needs to come down some more I think.

hugs,
Sharlene and Molly Muffin

Yes. I agree, Sharlene. I am asking them to increase it 1/4 tab at night before another ACTH test. That is not such a huge risk since there is a way to get down to a healthier cortisol level being on Trilostane from what I have read on this site.

I just cannot afford the ACTH tests...I don't have the $160 minus the $20.00 discount they did give me last time after telling me they would freeze the remaining dosage and not charge me for the next ACTH test. Norman is still drinking 12 cups of water a day, waking to go outside several times a night. His stomach fluctuates on swelling. He did gain .2 ounces in a month (I am not worried about that.) Hair loss not anymore noticeable. panting varies as well. With them changing his heart meds I think that may have something to do with his breathing as well. Not lathargic at all....sleeps but as soon as I wake up, move or get up he is awake and following me or waiting for me to get up. I will lay in bed still just waiting for him to wake up before I move to drink a sip of water myself as not to wake him. This is just exhausting....But I am learning, I appreciate every day with Norman and just trying to live in the now while trying to live with this neuro condition.

The Vet is suppose to ccall me back tomorrow, I'll post what they suggest. Thank you Group! :D <3 and hugs to you all!

[addy]

Addy, Do you think I should ask my Vet for a prescript for Vetroyl instead of Trilostane so that Norman gets a true and accurrate amount? and maybe get it more reasonably and in a speedier fashion?

I am worried about the cost for you if you switch to name brand. I cant find my last bill but hubby is picking Zoe's monthly boxes today so I'll have the exact amount. It is something like $52 for 30 10mgs and a bit more for 30 of her 30mgs and I use two boxes of 10mgs so I am spending alot per month compare to compounded from Diamondback. Still less than what Vicki pays from her vet.

I did not mention UW Madison to you because it is so far for you to drive, I did not think you could do it. My neighbor used that teaching hospital twice and ending up driving back and forth a lot. She had mixed reviews of it but I dont remember what was wrong with her dog and she is in Florida for the winter.

I just kept finding groups in Wisconsin to help with low cost spaying not with other medical issues. I go out to Pewaukee but it is enpensive 78 for the test and $125 I think for the agent 1/4 vial so that is even more than you pay.

I hope Glynda found something for you.

[SoggyDoggy]

Someone please correct me if I am wrong, But I don't think Vetoryl is available in tablet form, only capsules, which would mean you wouldn't be able to split them Sharon. Cost comparison aside, if you are still tweaking the dose, the beauty of the tablets your vet is getting for you is that you can alter the dose quite easily by breaking the tablets.

Just something else for you to think about there! :o

As far as the vet prices go, can you ask them for a complete breakdown of the costs? As in how much do they charge to send the bloods out and how much is the actual STIM agent vial? If they are freezing it like you asked and charged you for the full vial each time, there should be more than a $20 discount I would think (unless they have split the discount over the number of tests). Sorry if you've posted that already, I may have missed it, but it could help us support you in making an argument for the vet.

[SoggyDoggy]

Sharon, I've just gone back and read the whole thread, can i just confirm a couple of things?

Norman's current dose is 15mg morning and night (3/4 of a 20mg tablet per dose), totaling 30mg per day, is this correct? And his last ACTH was 11 Jan (which gave a post result of 17.1). Again, correct? If I read right, he was on 10mg 2x a day till that ACTH, then the dose was increased to the 15mg 2x a day which is his current dose, and a current weight of 23.6lbs.

I am wondering if you have noticed any actual improvement in him over the last two weeks since his stim test and dose increase.

[NoonelovesmelikeNorman]

Hello Naomi, Thanks for the help decifering. Yes how you explained it is correct. since starting the Trilostan Norman doesnt wake up every 45 = 60 min. But still waking up 3-4 times at one point he has was walking to grass or stones to urinate. He is going backwards with improvement. Urinated in the apt yestersay, going on the side walk or right out the door. up 3-4 times a night to go outside. He is hungrier I think.

The vet did call back today and asked me to be more patient, still to early to tell if increase is helping - I disagreed...I made it very clear that I CAN NOT afford the ACTH testing before increasing the dose, specially when the symptoms are not improving and going in the wrong direction. She informed me of the damgers of over dosing....I MADE IT CLEAR TO HER, if my options is to increase and take a chance something bad might happen or put him down I think I will take that chance and see if he gets better - I told her I would wait a week or maybe two to see if the meds start to work better however, if not she will have me sign a form stating I will not hold her responsible if something bad occurs witht he increase of the dose without an ACTH test. I also explained to her the numbers dont matter to me as much as the symptoms...and they are maintained or getting worse not better with the increase of meds. The number need to go down quite a bit to be in a normal range...

I would like others opinion on going from 3/4 of 20 mg tablet am and pm to one whole 20 mg tablet twice a day... I will watch him closely to see how he reacts...I have the meds (predisone??) incase he does have a bad reaction.
What do you all think about that increase...most likely wont happen until the middle of the Feb, which means I still have to wait to see if he improves OR I could just give hime 1 - 20 mg tab at night now and 3/4 - 2 mg tab in the morning and see how that goes and report that to her....then I could ask for them to give me 20 am 20 pm if I dont see a lot of /much/ some improvement.

What do you all think?

Thanks Group! :D

[labblab]

Sharon, did you just begin the new dosing (3/4 tablet or 15 mg. twice daily) on 1-21 or has he been on it since earlier in the month? If this is only the fourth day on the new dose, I would give it at least one more week before considering increasing again.

Marianne

[NoonelovesmelikeNorman]

Sharon, did you just begin the new dosing (3/4 tablet or 15 mg. twice daily) on 1-21 or has he been on it since earlier in the month? If this is only the fourth day on the new dose, I would give it at least one more week before considering increasing again.

Marianne

Yes, I just began the 3/4 tablets on the 21st - I do agree I should give it one more week and see how it goes...Patience... patience... I know....but he is going backwards it seems, with the urnination (inside and out) and no improvement in water intake.

As well as the change in their decision to not charge me for every ACTH test when they admitted they froze his vial. I do appreciate every discount - even the $20 they did give me instead of no charge....but changing the minds not cool!

Sorry for venting...again. I do appreciate the great advice and I will be patient and wait a week before any changes...I will keep praying he just starts showing some improvement.

Thank you!

Sharon

[molly muffin]

Sharon, did you check to see how much just a resting cortisol test would be?
I know the ACTH is too much over all for you to handle so repeatedly, but at least knowing what the resting is before increasing might help.
What do you think?
I agree that one week is not enough to know anything about what the cortisol is doing.
Remember, cortisol levels can continue to drop for awhile even on the same dosage.

Sharlene and Molly Muffin

[addy]

Sharon, I understand this is hard and very frustrating for you but being so anxious and impatient is not helping Norman at all. In my opinion, you simply cant keep wanting to change his dose every week. you really need to take some deep breaths and try to calm down for Norman's sake.

Did you say this new vet increased his heart drug (which is a diuretic)?

Hang in there, take some deep breaths and slow down, okay?

[NoonelovesmelikeNorman]

Sharon, I understand this is hard and very frustrating for you but being so anxious and impatient is not helping Norman at all. In my opinion, you simply cant keep wanting to change his dose every week. you really need to take some deep breaths and try to calm down for Norman's sake.

Did you say this new vet increased his heart drug (which is a diuretic)?

Hang in there, take some deep breaths and slow down, okay?

Hi Addy, for the past 2-3 years Norman was on 12.5mg Furosemide - 1/2 pill am and pm. The new Vet originally changed that to 20 mg furosemide - 1/4 pill am and pm. On Wednesday of this week the Vet suggested that I skip the evening pill all together and see if that helps with him not having to wake up still three times a night. That is quite a drop in his heart meds, I understand it is a water pill so, OK lets try it. - however it hasn't helped with him needing to go out - didn't make a difference. I wonder how much it is effecting his heart though?

I am trying to be more patient, I just know the dosage is not high enough. Norman is going in the wrong direction with his symptoms. I am going to give the 3/4 dosage 10 days and then see...the Vet has agreed if I sign a form that take the responsibility off of them if something happens to Norman. I am only going to go up slightly (if /When)?? I am very concerned about coming up with the funds for another ACTH test/ when she agreed she would this time not make Norman have the test before agreeing to an increase was a bit of a relief.
I still need to come up with the money for a another prescription....I am hoping my son's girlfriend found someone to buy a guitar that was in the trash where I live. Even a few dollars will help.
I have to put his in God's hands...as long as Norman doesnt have accidents in the apt..I can stay calmer. One moment/day at a time...

Again, thanks to you and everyone for the advice and encouragement.

Sharon and Norman

[Squirt's Mom]

Hi Sharon,

As you can tell, several of us are quite concerned about raising the dose after such a short time based only on signs with no testing of any kind. It is only because we care about you and we care about Norman. It would simply destroy me to think I had done something that caused my Squirt to become seriously ill, or worse took her life. I do not want to see you to face that either. On top of everything else you are having to deal with, that would simply be too much to bear.

I want to ask you a few questions then I am off to bed (I am having some terrible mouth pain today. :rolleyes:) and we will talk tomorrow if I am feeling more human. ;)

1) Are you aware that these signs you are seeing could be totally unrelated to Cushing's? That something entirely different may be the cause?

2) Do you fully understand the danger of Trilo? That it can be and has been fatal when misused? That Trilo is NOT a "safe" drug?

3) Do you understand that the drugs used, BOTH drugs, can take our baby's life when the drugs are not treated with the utmost respect much quicker than the disease of Cushing's can?

For tonite, try to rest and relax a bit. Love on your sweet boy, enjoy some time with him, and be good to yourself. Do some little thing that brings you joy. ;)

Hugs,
Leslie and the gang

[labblab]

Dear Sharon,

I've been thinking a lot about your dilemma, too, and wanted to add a couple more thoughts. Since Norman's first monitoring ACTH result was approx. 18 ug/dl, I do agree with you that I would guess that the most likely cause of Norman's continuing symptoms is a lack of optimal control of his cortisol. But before upping his dose any further than the 15 mg. twice daily, I also encourage you to ask your vet how much it would cost to perform a baseline cortisol. That way you'll know how soon you might be able to afford that testing, which in turn could make the timing of future dosing decisions safer for Norman. Depending upon how he is looking a couple of weeks into the 15 mg. BID dosing, I might even be "on board" the notion of another increase -- but feeling a WHOLE lot better about that decision if you could proceed with at least a baseline cortisol a couple of weeks after that.

I am mindful of the fact that your first vet originally discouraged you from trying to treat Norman's Cushing's at all because of the cost, and that you have persevered in trying to get the money to offer Norman his best chance for treatment. So I know this has been an uphill battle for you even this far and you are doing your very best to help him. Hopefully if we take this a week at a time and reassess all along the way, we can come up with a plan that will work for Norman.

Also, I confess that I was totally unfamiliar with your disability until I was able to research it a bit. For other folks who are unfamiliar with Complex Regional Pain Syndrome (CRPS), here's a link that explains the disorder:

http://www.ninds.nih.gov/disorders/reflex_sympathetic_dystrophy/detail_reflex_sympathetic_dystrophy.htm

Now that I know more about the disorder, I can better understand how difficult it may be for you to manage Norman's unresolved symptoms and the toll on your own health, especially in an apartment setting. So hopefully we can arrive at a plan that will facilitate his treatment, but not at the expense of his safety. Do let us know what you find out about the baseline cortisol monitoring, OK?

Marianne

[SoggyDoggy]

Hi Sharon,

Sorry, I have to agree with the others that you will need to be a little more patient here. When I was trying to work out the dosages and tests in my earlier post, I thought Norman had been on the 15mg bd a little longer than just a few days. Now having been on it for only 6 days, you need to give him still another couple of weeks if possible to settle on that dose and let those levels drop. As we all learnt when we started these drugs, they are not instant, and they have pretty severe consequences if abused, so for his sake, please be patient and give him the best love and care that you can.

I did read up on the CRPS a few days ago too, and it sounds awful. I'm sorry you have to cope with that and can understand that you would like Norman's issues fixed NOW, unfortunately the drugs just don't work that way. When he has an accident in the appt, is it always next to the door as he waits to get out? I'm just wondering if you could maybe put an old towel down for him to pee on (maybe even on top of a layer of plastic to protect the floor) that is easily picked up and washed, rather than having to get down and clean up the floor each time? Just trying to come up with some ideas to help in the meantime.

Again, please be patient and give Norman a little more time and in the meantime, take Marianne's advice and ask your vet about the baseline reading prices. Having a dog that went too low on cortisol readings from being too highly dosed, (while he thankfully didn't crash) is still scary, and unless you know what's going on with his bloods, you may not know until it's too late. None of us and especially you, will want that for the beautiful Norman, so hang in there.

[Tina]

Hi Sharon,

I have a sick feeling in my stomach and a lump in my throat after reading all of this. Please DO NOT adjust the medication on your own without proper stim testing. I understand the cost concerns, but what I am reading is scaring me. My Jasper had an addisonian crisis in September. He became toxic on Lysodren, and while this is a different medication than Norman is getting, I believe the symptoms of low cortisol and a crisis are the same regardless of the medication. He became violently ill rather suddenly, and was vomiting and wretching about every 1 minute, and couldn't stop. There would have been no way I could have gotten Prednisone down him. I rushed him to the vet and he was hospitalized immediately. My point is that I did every single thing according to the protocol and my vet's directives, watched him like a hawk, and this still happened. These meds are nothing to be messed around with. I care about you and Norman, and trust me, you do not want to see him sick like that.

I agree with what others have said about checking into getting a baseline cortisol for Norman. I have had a couple of those done for Jasper, and they are much cheaper than a stim test.

I am so sorry you are having to go through all of this, and understand how difficult this must be with your health issues, as I am up once or twice during the night also to let Jasper out. It does take its toll. Please hang in there Sharon, and don't put your boy at unnecessary risk by increasing the meds on your own without proper testing and monitoring.

Hugs,
Tina and Jasper

[NoonelovesmelikeNorman]

Good Evening Group...Yes, I do understand and have read over the adverse reactions and how to act upon them. I also understand and agree that I have to be more patient. I will give Norman more time on his current dose 3/4 pill of 20 mg am/pm. As I know it may build up and takes time to show progress.

My patience often depends on what type of day I am having. As well as the emotional affects of the pain that day. The pain is also another reminder.... if I wasnt assaulted and left with this condition I would be able to work one or both of my jobs and have the funds to care for my family - including the puppies and myself. :( vicious cycle...work in progress in every way every day....

I do feel very blessed how the past few months health issues for my loved ones including Norman have gone this far...Everyone is still alive....I have found this wonderful informative site that I trust your opinions...

I will let you know how Normans is doing and if / when I make a dosage change...I'll get your opinion again at that time. Thank you!

Sharon and Norman :D

[Concernedmom]

Hi Sharon I just wanted to give you an idea of how the numbers can drop. My 16# boy started vetoryl Dec 5 on 30 mg / day. Dec 17 he had his ACTH test and his pre was 9.4 post 10.8 The doctor increased the dose to 60 mg / day because she didn't think the numbers were low enough. In one day on this dose he began to shiver and become lethargic. People on this forum said they felt the dose was too high. They felt his numbers would continue to drop being on 30 mg. The next day I bumped him back down to 30 mg and the side effects went away. He had his 30 day ACTH test on Jan 4th and his numbers dropped to Pre 1.2 Post 5.7 These happen to be good numbers for my dog because his clinical signs were good. Every dog is different but the numbers can continue to drop. Sadly, last week I felt some of his clinical signs were returning so I had to do another Acth test. I don't have the results yet. They are very expensive but mine are a lot less than what you pay. For my very first ACTH stim test I paid $95 for the lab test and $171 for the ACTH. My doctor then freezes it so I get 3 more tests. So each test thereafter is just $95 for the lab test. Then I start all over again. Dr Mark Peterson talks about this in his blog and says that all the vets can do this to save their clients money. I just happened to come across this information while researching cushings. I hope Norman is feeling better

[Squirt's Mom]

Mornin' Sharon,

As you can see, I didn't get back to you yesterday after all. :o But truthfully, your answers to my questions alleviated some of my concerns. You say you know what you are dealing with and I choose to trust that. Plus you have the very best folks standing beside you to help. ;) And as you can tell, we don't have a problem saying, "WHOA! there Bessie!" :D Pretty sure I've heard that myself a time or 10 over the last five years. :p

How is Norman this morning? Let us hear from you when you can.

Hugs,
Leslie and the gang

[NoonelovesmelikeNorman]

Hello Leslie and the rest of the group.

I do appreciate getting the best advice for Norman, even if htat means...SLow down lady and take a deep breath - patience patience!!!

I feel so blessed to have found this site. I have learned so much from all of you and just being able to vent at times helps and to ask questions at any hour and know the next day most likely someone will have some direction or advice...so THnak you all!!

Norman is doing pretty good. I kept him at the 15 am 15 pm. He sleeps during the day for almost 3-4 hours so I just need him to do so at night. His urine looks like it has some color. I am hoping that means something good. His appetitie is good (mostly). He did throw up yesterday evening outside, but then a hour or so later he ate it???

He slept next to me for the rest of the evenng and for a few hours last night. He spilled his water bowl, and didnt drink it off the floor, before meds there would be nothing left ot spill and he would have licked the water off the floor. I think his water consumption is lower (another good sign. if he gets sick again I will skip his next dose and then lower the dose to 10 am 15 pm. and see what changes happen. otherwise he is doing well....it is nice to be able to get a couple hours of sleep at a time during the day and night.

Thanks for all the great advice and concern...My vet is willing to work with me on the testing and I will not increase without the ACTH test and am working on ways to come up with the funds for the testing...For now, I hope Norman keeps going in the direction of less drinking and urinating...it give me time beofre the next test.

I am not having a very good day pain wise so I hope to be able to nap for a bit and then sleep a few hours straight tonight if Norman cooperates.

Leslie, what type of condition are you dealing with....I feel for anyone with health problems specially chronic pain conditions...so debilitating, isolating, life altering...

Take care all...Peace and blessings.

Sharon, Norman and Millie

[Squirt's Mom]

Hi Sharon,

Good to hear from you and especially good to hear that Norman is not throwing up any more. It is really nice to hear that some of his signs may be decreasing. And it is REALLY nice to hear your vet is going to work with you on the ACTHs! WOOHOO!! :D (See, we need that "dancin' mama" icon here! ;))

I was dealing with some gum issues that were causing a great deal of pain the other day. They are much better thanks to some anti-biotics from 2011 I found :o and some herbal mouth rinses I have been using. I'm gonna have to start begging dentists soon. :p

But I do understand living with chronic pain, too. I call them my Little Fiends. :D Neuropathy is the biggest offender, followed by TMJD (the left side of my jaw is unhinged - no disk or ligaments on that side), and OA, worse in my back, neck, and knees. And you are so very correct - debilitating, isolating and life-altering. Not to mention disheartening, depressing, and dehumanizing. When folks can't see an obvious cause for pain, they often tend to think it's all in our head, or we are weak and whiny, or stuck up, or just plain lazy. They don't understand we are doing our best not to scream every time that foot touches the ground or we reach to scratch our nose. Yes, I understand more than I would like....and I don't suffer any where near what you do. I can't imagine the level of pain you bear. :(

We just have to keep plugging along. Or, as my dad used to say - lay our ears back, grit our teeth, and keep putting one foot in front of the other. I always envisioned a mule straining in the traces when he said this! :p I find something every day to be grateful for - the worse the day, the harder I look for those things. I can always find a reason to be grateful when I look into my babies eyes or when I sign in here. I hope you find reasons to be grateful each day as you need them, too.

Hugs,
Leslie and the gang

[molly muffin]

Hey Sharon,
That is awesome news that Norman didn't try to lick up the water from the floor.
Once water consumption decreases, due to cortisol lowering, then you should start to also see a decrease in the accidents. That would be great for both of you. :)
I'm glad your vet is willing to work with you on testing costs.
Just keep hanging in there. :)

hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Hi all!
Norman is back to drinking quite a bit again. Accident in the kitchen, not so bad for clean up. Up about four times last night :( . Tired and in a lot of pain today...tried to help my sister in law hang some pictures and art work of the kids in the apt today...Now, off to bed. Tonight, hopefully, he will sleep better and we'll see what tomorrow brings.

Thanks for the encouragement and advice for Norms....Sticking with his 3/4 Trilostane am and pm

Peace and Love,

Sharon and Norman

[NoonelovesmelikeNorman]

Norman was up at least 5 times last night to go out. Then around 5:45 whinned to eat. I scolded him and told him not time, He rested and I didn't feed him 7.

Yes, Sharlene, I was really happy he did'nt lick up the water he spilled. However, he spilled the water - acting out for food. There was at least 2 cups in the bowl. So his thirst is getting better, at least that day. Yesterday, not so much....
Up and down - part of finding the balance...searching for the patience. He ate and is sleeping now. I have to head to the pool. Low fronts coming in... and a snow storm.

Thanks for the continued support and advice.

<3 Sharon and Norman

[Squirt's Mom]

You are doing a great job of observing Norman and noting the changes you see (a critical part of living with these cush pups), and doing really good on the patience front, Sharon. Patience SUCKS, huh? :D But I am very proud of you.

Enjoy the pool as much as possible and stay warm! We had a night of thunderstorms and tornado scares last nite in our area so we were in and out of the closet and crate for several hours. In the 70's yesterday and down to the 30's last nite. :eek: If you don't like the weather in Arkansas, just sit there a minute and it will change! :p

Hugs,
Leslie and the gang

[NoonelovesmelikeNorman]

Thanks Leslie! Thanks for the supportive words. Living in Wisconsin is pretty much the same, if you dont like the weather give it 10 minutes or so and it will change...was warm and rainy yesterday today a snow storm....

Norman has been resting a lot today, but I gave the pupps a bathe so that helps some. I noticed yesterday and today his stomach is very bloated again...some days are better than others with that as well.

The pool and sauna after, help my condition or help me deal with the pain I try to go every day or I sit in the bathtub but then I can't move.the pool is helping atrophy from developing. Grateful for the warm water pool just wish it were deeper than 3.6 ft so I could stand or tread water and pretend I am walking...the water makes my body boyant and the warmth helps releif the pain a lot really blessed I have found the pool.

Have a great night all..cat nap and then to church for a few hours.
Puppies are going to visit a freind while I am gone.

Peace,

Sharon = )

[addy]

Hey Sharon,

Be careful on the roads, I think you got the worst of the storm in your neck of the woods!!!!!

[NoonelovesmelikeNorman]

Hey Sharon,

Be careful on the roads, I think you got the worst of the storm in your neck of the woods!!!!!

Thanks Addy! Snow = SLOW. = ) I don't think we got a tremendous amount but enough to be plowed. The property people didnt plow the drive way well..I hope it doesnt freeze....only six more weeks of winter.:D

Sharon

[NoonelovesmelikeNorman]

I can't wait for the vet to call today. Norman was up again last night 5-6 times. He drank 4 cups of water through the night, no wonder he is always wanting to go out./ :( peeing a few steps out the door on the patio. /not good. But did hold it and no accidents in the apt. Total drinking between 12- 14 cups a day. He is also quite hungry, so in between meals I am giving him appples, bannana and carrots, what ever I have of those. I also give him a few kernels of food to hold him over twice a day. Stomach still swollen, breathing better last night. Tummy hair pretty bare but I can't remember how it was last month to this. :o ..his ears, head, other areas are about the same with loss, nothing really noticable.
I know his meds need to be increased. They have to order them today or tomorrow or I will run out and then he will really go backwards going a few days without any meds. They take about 7-10 days to come in. I'll let you know later tonight what the vets thougths are. Currently, the plan is not to have the ACTH test before raising meds, this time. More than 3/4 of my Feb ssd check is already called for with rent and garage door replacement. Looking at March for next ACTH test, unless I can sell the CPAP machine, trade a $50.00 hobby Lobby card for $45.00, and sell a few other items or other arrangements come thru. When I have the funds it will get done ASAP. I'll ask about doing the partial test. But would like to have a complete test done.
I don't get how some vets allow meds to start without a test and others start insist on test even with all the signs. I get the whole the medicaine can kill your pet but why do some and not others give meds then test?? All I know is Norman still has a lot of the key symptoms :( and I just know his med level is not where it needs to be. I am not being inpatient. I just know, it isnt where it needs to be. His symptoms are very consistant with the need to increse the level. I will get his ACTH checked just not at this time. I know my vet will be cautious with the increase and he will be monitored closely, I have predisone and it will be at least 7 - 10 days before the increase will begin.
Thanks for the information, support, laughter, patience reminders, and all...

I'll update later on what the vet suggests.

<3 Sharon and Norman and Millie too ;)

[labblab]

Hi Sharon,

From all that you are describing, if I were in your shoes, I'd be looking to try an increase, too. But in conjunction with an increase, I really do encourage you to ask your vet about the cost of a baseline cortisol. As you already know, the biggest danger to Norman is that his cortisol level could drop too low. So from a safety standpoint, that is your greatest concern. From what I've been reading, I think most researchers agree that it is far less likely that a dog's cortisol is being oversuppressed as long as the baseline reading is higher than at least 2.0. So I still think that might be a helpful "interim" test a couple of weeks down the road. The ACTH is definitely the "gold standard" as far as overall dosing decisions. But right now, Norman's safety is paramount. And coupled with your observations as to how he's doing a couple of weeks into the increase, I think a baseline cortisol could help provide some peace of mind. Unless, of course, it's so expensive in and of itself that it would postpone being able to do a full ACTH for a lot longer time...

Marianne

[NoonelovesmelikeNorman]

Hello Marianne, and the group!

Did speak to the Vet today. Shared everything with her I did with you. She is reluctant to increase without the ACTH, her attorney has not developed a doc for me to sign yet. She is ordering 30 mg tablets trilostane, when the come in we will decide from how Norman is doing what step to take next. If he is still waking multiple times and drinking the same I will increase the dose. I will ask about the cost of a baseline cortisol. Either way, Norman will be on the same dose he is on now until Monday the 11th of Feb. The meds most likely won't come in before then. It will give Norman more time to adjust to the 3/4 tablets of 20mg Trilostane am/pm. And maybe by then I will have the funds to get a full ACTH test. I forgot to ask the Vet about his increase in hunger, anyone have any ideas about that??
I want to make sure you all know, I am not saying I won't ever get the ACTH, I just can afford to get them so often. My freind is posting the CPAP machine, masks, heater etc on some site (memory ahhhh) if that sells I will get him tested ASAP. I don't want to put Norman in any harm, I am doing the best I can with the finances I have. I have to make sure he has the medicine so he has at least some sort of a better quality of life. In the mean time I will call tomorrow about the cost of the baseline cortisol..any ideas about how much that should cost??

Thanks again for all of the encouragement and advice.

With tremendous gratitude for this site and all of you,

Sharon

[molly muffin]

Hi Sharon,

I agree with everything that Marianne said. Optimally an ACTH would be the best thing, but without that a baseline should give you and your vet an idea of where his resting cortisol is at and if it goes too low. So, having said that, is your vet in tomorrow? If not tomorrow then Monday for sure and write it down on a pad so you don't forget (I keep a huge pad here on my desk and take notes like I'm in school still). :)
Anyway, ask about the price of the resting cortisol test. That will give your vet time to research it too if she needs to.
Sure all the symptoms Sound like Norman needs an increase. This option might be a good one that works for you.
We tend to stick to the guidelines of what is recommended because of a couple things, we've seen that these work and we've seen the possibilities that Can happen if they don't. Not necessarily Will, but Can.
And you know us, we always go on the side of caution, start low, work your way up as needed.
Some vets Do you use the baseline rather than the full ACTH. They don't actually test with the ACTH all that often even. I don't know why that is, but there you have it.
Now call the vet and ask about that baseline!
We're going to get Norman figured out yet! Remember not all dogs read the cushings book. We can name several on this board that decided to add their own chapters to the book of knowledge. :)

Oops, I forgot to ask, was Norman ever checked for a UTI? If not, ask them how much that will cost too, for the full culture.

LOL

Sharlene and Molly Muffin

[labblab]

Sharon, has your vet already placed the order for the 30 mg. tablets? Since you're planning on a dosing increase, I'm thinking it would have been better to stay with the 20's. They can be split more easily into 5/10 mg. pieces, and if you advance to 20 mg. twice daily, the dosing would be really simple. The 30 mg. tablets are really only useful if you remain on the same dose (15 mg. twice daily) since they otherwise split into odd dosing increments.

Also, depending upon what your vet is charging, you may be able to get a better price on your trilo if you order it yourself (with an Rx) from one of the online compounding pharmacies that many of our members use. How much are you paying for the trilo now?

Marianne

[Squirt's Mom]

Hadn't thought of that aspect, Marianne. Squirt's Lyso is almost half what it would be if Doc ordered it in for me. I pay almost half of what he would charge by ordering myself and having it sent directly to our house. They send Doc a request for a 'script, he approves, and it's done. Definitely worth looking into, Sharon! ;)

[NoonelovesmelikeNorman]

Good Morning All,
Norman did have is Urine checked several times, UTI when I first brought him in. They think....vet will call back on Monday to answer the questions more completely.
Baseline Cortisol - $36.00.
Complete Urinalysis - $24.72
Trilostane 20 mg tablets - I don't have info with me but between $81-95.
Until Norman is at the correct level of Trilostane I think I have to go through the Vet for his meds. As she can get the tablets which are broken in 1/2 or 1/4 then given as directed. It is my understanding when ordering the other places online only come in capsels which cannot be opened or divided?? Is that correct?
Norman's belly looks even more beloated today. Anyone have any thought on what does that might indicate??
He was up 4 - 5 times again..last night.

At this moment I can only get the meds.....feeling defeated for my poor Norman...Crying....Mama is trying boy....this month can't go fast enough...Praying and not giving up hope. Not yet, ....the medication just needs to start helping with the symptoms. Sorry....emotions are running high today.
Wising you all a great weekend. Sharon

[labblab]

Sharon, you can order tablets that can be split (rather than just capsules) in many strengths from certain internet compounding pharmacies. I think the price you are paying sounds awfully expensive, so I bet we can find you something cheaper! So don't give up hope, OK?????????????

[molly muffin]

$36. for the basline cortisol sounds doable. Much better than the 160. or discounted 140. for the full. And it would give you and idea of where he is at.
I don't know for sure about the bloated and what might be causing that? Doe she have gas? Also an enlarged liver causes a bloated look in that it pushes outwards. My Molly has that.
Don't be defeated, it's a bad morning and you can get through it. You are stronger than you know. Some days are just going to be harder than others. I think that what you have told us is good and I bet we can find the pill form cheaper than what you are paying now. We'll work on that okay. :)
Now, come on..perk up, we're doing a Great BIG Group Hug here

{{{{{{{{{{{{{{ HUGS}}}}}}}}}}}}

Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Oh thank you ladies, and gents!!...
Mornings before pool are always worse...warm water therapy and sauna help with the pain and seem to rejuventate me from the lack of sleep as well..:)

I maybe switching Vets...I spoke to a friends vet this morning. His office charges less for the ACTH testing, they heard of using the vial more than once for smaller dogs, and he also said he could get the medication cheaper...like $62.00 compared to the $81-90 Although, it would be the capsules not tablets. The Vet recently went to a conference on Cushings disease and there he found there was a benefit to giving the full dose at a time or you may never get te dog to a point where throughout the day they have the cortisol level where it should be. I discussed a little about my financial situation and he said they really try to work with the clients. He said there is another test that can be done in place of the ACTH to monitor and that depending on the symptoms they would try to get the ACTH test dowm to 2-3 times a year. He also mentioned maybe switching at that other drug if symptoms were not improving but he felt the dose was not high enough according to his charts, Norman should have started on 30mg a day. and since he still has the symtoms he would not have a problem increasing the dose, according to his weight he would be on the lower end but should be between 30 mg and 60 mg a day. Also mentioneed something about some have tried every other day dosing, doesnt sound like right now that would be something for Norman. he also discussed the cationary aspects of both...dont remember what he all said right now. I didn't have pen and paper as I was walking into the YMCA when he called but the prices were cheaper and I am pretty sure I have the info correct above....memory is not always the best. :o
Thoughts??? on this...this Vet just seemed to be more understanding of my financial situatiion. I liked that he just went to a conference on cushings :D and he has been a vet for a long time so he should be familar with cushings and keeping up on the latest findings.
So I am grateful and thanking God ...the day seems brighter and a bit more hope :D in managing Normans cushings without seeming like I am failing him because of my financial situation.
And I am so grateful for all of you and this group...I wouldnt know what to ask or how about getting through this...without this site...So grateful for you!!:D:D:D God Bless You!

Love and Hugs right back atcha! Sharon

[lulusmom]

Sharon, I don't have time to go into detail but regardless of this new vet attending a recent conference, your current vet sounds a lot more knowledgable about the risks associated with Trilostane. The comments the new vet has made is quite concerning. I have to run so will explain later but in the meantime, can you let us know how much cheaper this new vet's price is for the stim tests. Also, if you get compounded trilostane, Diamondback Drugs can save you a lot more money than this new vet and since your current vet doesn't have a problem with compounding pharmacies, she is more likely to give you a prescription. Be back later.

[NoonelovesmelikeNorman]

Sharon, I don't have time to go into detail but regardless of this new vet attending a recent conference, your current vet sounds a lot more knowledgable about the risks associated with Trilostane. The comments the new vet has made is quite concerning. I have to run so will explain later but in the meantime, can you let us know how much cheaper this new vet's price is for the stim tests. Also, if you get compounded trilostane, Diamondback Drugs can save you a lot more money than this new vet and since your current vet doesn't have a problem with compounding pharmacies, she is more likely to give you a prescription. Be back later.

I didn't ask about just the stim test.
I am sure the new vet would allow me to get the meds from Diamondback drugs not 100% sure but my current Vet never said she would agree to that yet.
Current vet has only been a vet for a few years new one has been for 20-25 years.
They do the ACTH testing in-house around $96
Alright, talk with you later...

[SoggyDoggy]

Hi Sharon, I must admit there are a couple of red flags for me there too. For a start, Norman already is on 30mg a day at the moment (15mg am and pm), and there is some thought that the twice a day dosing requires a lower overall daily dose than once a day so he could be getting the effective of a higher dose once a day, however every other day dosing is against all published literature and is not a good idea. The reason being is that to controll the cortisol levels, you have to give such a high dose so as to effectively crash the dog on one day then let them recover the next only to turn around and crash them again. Using the word crash may be a bit extreme, but the levels swing so high in the body when doing this that it is not good for the dog.:( I have big concerns over this and for hime to suggest it is plain scary to me.

I can understand that the appeal for the cheaper ACTH tests is high, however don't get sucked in to the cheaper drug sourcing as appealing just yet. Your current vet has ordered you the tablets as they can be broken up, which means while you are still tweaking Norman's dose to get the right level, you can continue using the tablets you have. If you were to go to the capsules, it would mean purchasing additional capsules, or potentially discarding the ones you have and buying a whole new batch whenever you need to change his dose. Long term this has the potential to be far more costly! When Norman's dose is settled (and it sounds like he is slowly getting there), then you will be able to switch to the capsules and save yourself the money. I'm sure at that point your vet will be happy to give you the prescription to get them from diamondback. As it is, she is having to send out to have them compounded anyway, so I can't see it bothering her one way or another.

Other's are still far more knowledgeable about this than I, so I will be interested to hear what they too have to say, but for now I would hold off on making that decision.

[addy]

Hey Sharon, Happy Saturday night!!!

About the new vet, I am a tad concerned about some things mentioned, like every other day dosing and his thoughts on twice day dosing, his starting dose suggested for Norman. He may have 20-25 years in as a vet but how many dogs has he treated successfully with Trilostane? That is an important question to ask along with how long has he been prescribing Trilostane?

Case in point- I took Zoe to see a dermatologist, we have none in Milwaukee and this one came in once a month. He had really good credentials on paper, had been practicing forever but he readily admitted he did not use Trilostane much. My IMS even got snippy with me because I did not discuss Zoe's dosage with him. I told her flat out, why would I? He has no experience with the drug and I am not going to follow his suggestions.

So anyway, just my two cents:D:D:D;);)

[NoonelovesmelikeNorman]

Thanks again for the input.
I have not and will not be making the switch for weeks, if I do. The Vet today may have been referring to going every other day and then down to once a week on a different drug as some dogs don't respond as well on Trilostane as this other drug, I dont remember the name. It is an older drug before trilostane became an option.
But he also did state that he would recommend not giving the trilostane every 12 hrs. My current vet did not want me giving Norman the trilostane every 12 hrs. specially when having the ACTH testing, I told her the group recommended the 12 hr dosing. I think I may try giving Norman his dose all in the morning or all at night and see what happens.

I will call on Monday about the cost of just a stim test.

Thank you, Thank you for the guidance.

Sharon

[addy]

Ok glad you clarified it for me, thanks!!!:D:D:D:D Not that I dont ususally trust vets, but I dont usually trust any doctor:D:D:D:D:D:D:D

Have a wonderful Sunday, it is going to get bitter cold, I think, below zero.:eek::eek::eek::eek: So stay warm. Im off to find Zoe a soft cone on line in case she has to wear one after surgery. The Comfy cone I have is heavy for the wee one!!!!

[Squirt's Mom]

Hi Sharon,

Just a few thoughts -


Thanks again for the input.
I have not and will not be making the switch for weeks, if I do. The Vet today may have been referring to going every other day and then down to once a week on a different drug as some dogs don't respond as well on Trilostane as this other drug, I dont remember the name. It is an older drug before trilostane became an option.

This is probably Lysodren he was talking about. It works differently than Trilo and from what I have seen, could be a little less expensive to use as Lyso pups don't seem to require as many ACTHs as Trilo pups do. Lyso would be given twice a day for a period of time until what is called "a load" is achieved. Then the pup goes on what is called a maintenance dose that is given once a day 2-4 days a week instead of daily. IF you make a switch, you MUST wait at least 30 days between stopping the Trilo and starting the Lsyo.

But he also did state that he would recommend not giving the trilostane every 12 hrs. My current vet did not want me giving Norman the trilostane every 12 hrs. specially when having the ACTH testing, I told her the group recommended the 12 hr dosing. I think I may try giving Norman his dose all in the morning or all at night and see what happens.

Trilo cannot be given at night unless you have the option of having ACTHs done during the nighttime hours. Trilo pups must have the ACTH within a 4-6 hour window after the dose. So if Norman took his dose at 6pm, he would have to have the ACTH completed no later than midnight. Very few vets are working during those hours.

I will call on Monday about the cost of just a stim test.

Thank you, Thank you for the guidance.

Sharon

[addy]

I think Sharon was referring to twice day dosing, Leslie, not once a day in the pm, if I understood correctly, right Sharon?

Dang, Sharon, it is already snowing!!!!!!!! Head for the hills!!!!

[Squirt's Mom]

I think I may try giving Norman his dose all in the morning or all at night and see what happens.

I may have misunderstood...wouldn't be the first time for sure! ;)

[molly muffin]

Not sure why a vet would be adverse to twice a day dosing. With a dog with diabetes, you Need to give it twice a day to prevent spikes.

Isn't this something Doctors Peterson and Feldman recommend when the symptoms are not completely controlled during the evening hours? They are after all some of the top researchers in the world involved in cushings and even recommended by Dechra (the makers of vetroyl). I would take what they say over any general practitioner vet. Of course you can try going to one a day in the mornings, didn't you start out doing that Sharon? or did you go straight to twice a day dosing? Just don't do all at once at night.

As far as every other day dosing with vetroyl. Bollycock. That is absolutely against recommendations of the manufacturers and for a very good reason. You are basically forcing the dogs body to not produce one day and then to shoot up and over produce the day they don't take the medicine. No ACTH test would be worth it's weight in gold with that regime.

I don't know where some of these vets come up with this stuff. We've read and heard all the latest papers and studies on Trilostane and not one of them has said this has any benefit to the dog or to cortisol control. It's like they just make it up off the top of their heads, then tell their colleagues that this is what they are doing and it flat out amazes me.

Sorry that was my rant Sharon. If even one can prove that 1) they can suddenly make Trilostane not leave the body in 12 hours 2) that an ACTH test on day after given a dose is going to be valid on a day not given a dose 3) that this has any benefit in helping control the symptoms, I'd be willing to consider it. So far none of them have. I don't mean Joe blow vet down the street either. I would want to see a study showing absolute proof before doing it to my precious dog.
Hmmmph
I'm sure that you'll get this figured out Sharon. Just be careful of the what routes you choose to pursue.

hugs,
Sharlene

[addy]

My misread Leslie, you are absoluetly right, cant give Trilostane all at once only at night only. I need glasses or a new brain:p:p:p:p

I know, I need to leave this brain freeze cold weather:D:D:D

Only in my dreams, I'm afraid:rolleyes::rolleyes::rolleyes::rolleyes:

[NoonelovesmelikeNorman]

Morning all...
I didn't switch Normans dosing...And do remember the neccessity of having the dose within 4-6 hrs of te ACTH test. At some point I may try the all morning dose - not sure how to go about that switch (maybe 20 mg morning 10 mg at night, then go to 25 am 5 at night and finally all 30 mg in the morning) but I wont be doing that right now....But think it would be worth trying...I dont know???
I didnt try giving the full dose in the morning...I started off with 12 hr dosing as this site recommended it.
I wont be taking Norman off of Tilostane....I can't go back to every 45 - 60 min wake ups for 30 days...so he will be staying on trilostane.
I checked out dechra site early this morning and with Normans weight she recommends starting him off at 60 mg - although he is at the lower end of the weight limit - so I can see starting at 30 mgs but my vet started at 20mgs? Norman weighs 24.6 pounds, Norman doesnt have diabetes.
Normans symptoms are still very much obvious....waking and going out 4-6 times a night..I dont keep track during the day. A few accidents still, beloating has not gotten any better, and still drinking between 12-14 cups of water..I don't understand why my vet started with the 20 mg - according to Dechras suggested dosing.
either way his dose needs to be increased....She said she was ordering 30mg tablets I dont how many or what amount she will have Norman take? I'll find out next week Monday the 11th. I have a lot of appointments next week and will not be on much next weekend. ps my H 's are not working on my keyboard so you might have to add them to words...really press hard...not sure what to do about that either?? :(
Until then, yes all stay warm! No snow in Sheboygan yet Addy :D
Wishing you and all of our pupps a good, healthy quality of life.
Love, Sharon and Norman (Millie too) ;)

[NoonelovesmelikeNorman]

Also wanted to add Normans panting....that has not improved either but he also has an enlarged heart and the current vet lowered his dose and stopped the afternoon/evening dose.

May God grant us strength, patinece, and mercy for our pups...Guide us to do the very best for them.

Love, (((hugs))) and peace,

Sharon

[apollo6]

Dear Sharon and Norman
Keep on fighting for as long as you two can. I would say to my Apollo we are not giving up yet. Let Norman know you are there for him. Try to cherish the moments, when you can take time to be with him. Love as only you can. There is always hope, faith. Addy's Zoe is still here. Apollo would have been 14 in October. Never give up as long as you can.
HUgs Sonja and Angel Apollo

[NoonelovesmelikeNorman]

Dear Sharon and Norman
Keep on fighting for as long as you two can. I would say to my Apollo we are not giving up yet. Let Norman know you are there for him. Try to cherish the moments, when you can take time to be with him. Love as only you can. There is always hope, faith. Addy's Zoe is still here. Apollo would have been 14 in October. Never give up as long as you can.
HUgs Sonja and Angel Apollo


I do intend to...no one loves me like Norman...my mom came in a close second...I always said that even before mom passed. It is difficult with my neurological condition to keep getting up with him I am feeling alone, trying to come up with ways to pay for testing and meds...Putting millie's vet care on the sideline but appears to be alrght - Noman needs the help at this time.
This site has been a God send. So much to be grateful for every moment with the pupps, this site, new friends, learning and being a support to others (hopefully).

Gratefull for each moment / day.

Love Sharon

[NoonelovesmelikeNorman]

Update on current Vet phone call:
She called today to answer questions, but I don't remember everything I called and asked her on Sat. The girls take notes though. Anyway, Current vet consulted with a vet at the clinic. They agreed to up Normans Trilostane to 20 mg am / pm :D and then if we still dont see improvement in symptoms to go to 30 mg. She went over the potential side effects, what to do..etc. I did explain about Dechra's site that with Normans weight she suggests starting dogs Normans weight off at 30 mgs, although Norman is just a few pounds above the lowest weight for the 30 mg level, so I didnt think there would be a problems with the 20 mg am/pm.
Problem is I most likely am going to run out of meds before the ordered ones come in - one day short...can only imagine how that night will go :(

She didnt insist on having the ACHT testing. Altough I did tell her that when I come up with the funds I will have him tested. I do want to know how he is doing clinically as well. I am gratefull, she is willing to work with me (now).
I'll keep a close watch on Norman (who is asleep now :( )

Potential new Vet was not in today to ask cost of stim only test and if he would be willing at somepoint to write a script to i could order from compounding site and ave it shipped to my apt directly, I will call again tomorrow...they have longer hours 9 -7 most days sat 9-2, kind of like that.

I thank all of you for the encouragment and advice...I'll keep you posted...this weekend I am paticipating in a Healing Seminar this week/end so I won't be on as much if all later in the week and weekend. I won't have or be able to start new meds till monday.

Peace, love and hugs,

Sharon, Norman and Millie

[labblab]

Dear Sharon,

I am really hoping that the increase to 20 mg. twice daily will do the trick for Norman. As we've already discussed, given his previous ACTH results and the ongoing severity of his symptoms, I think that is what I would do, too, if Norman were mine. But after this increase, I absolutely think you need to wait at least 30 days and also perform blood testing before considering any further increase.

I see you are referring to Dechra's published dosing chart in thinking that a 60 mg. total dose may even have been recommended initially for a dog of his weight (26 lbs., right?). I want to throw a huge "caution" out in that regard. It drives us crazy here that Dechra's published chart has remained unchanged in the face of recent research and even the verbal recommendations of their own technical representatives. That chart and the rest of Dechra's Vetoryl information sheet is the product of the original research that led to the application for FDA approval of the drug several years ago. That published information has not been revised since that time and does not reflect changes in thought and dosing recommendations that have come about due to newer, ongoing research. The initial dosing recommendations now adopted by many specialists are much lower. Dechra's own verbal recommendation is an initial daily total of 1 mg. per pound. So it was very appropriate that Norman started out at the lower dose that he did, and not higher.

Having said that, dogs do metabolize the drug differently. And that is why two dogs of the very same weight may ultimately end up needing very different doses in order to optimally control their cortisol. But that is where the blood testing is so important, in conjunction with outward symptom resolution -- to see how each dog is handling any given dose.

I say all this so as to caution you from quickly leaping forward with yet another dosing increase if you don't see immediate results from the 20 mg. twice daily dose. I really do believe you need to wait at least one full month before moving ahead yet once again. But first things first. I'm sorry Norman will be one day short of his new medication. I'm just musing...might you want to give him 1/2 a dose on those last two days rather than skipping a dose entirely on the final day? Don't know if that would help any, or instead just make you both more unhappy on two days rather than one!

I hope your conference goes really well for you. And of course you know I will be really anxious to hear how things go next week.

Marianne

[SoggyDoggy]

Hi Sharon,

to back up what Marianne has said re dosing and different reactions, you could almost compare Fraser to Norman. Fraser weighs 22 pounds, and despite my questioning, the vet that I saw started him on 60mg of Trilo daily once a day. Within 20 days, he wasn't exactly lethargic, but he was "off" and just wasn't right, and so I booked in his first ACTH (which I was told to do at 30 days by the way - another mess up she made). Turned out his cortisol had dropped to 0.9ug - WAY to low! Considering what had gone on and the bad advice I had gotten from the vet so far (though the advice given here was spot on - thanks everyone) I then went to the IMS and she said she was glad I had stopped the dose against advice, stay off it until symptoms resumed. About 10 days later again, symptoms started to come back with a slight increase in drinking and appetite. We then start at the newly recommended 10mg twice a day. On the 10mg, his results came back in her words, "text book perfect".

So that's an example of what can happen when you start at the top end of the scale when not knowing how a dog will react - hence the recommendations to start low. If I had followed the original advice, there is every chance Fraser would have ended up very sick, or even have died. I know you are hoping for Norman to get better fast, but there is wisdom in your vet having started a low dose and working upwards. Hopefully this next step will be the small increment needed to make him just perfect too. basically, Norman vs Fraser - similar weight, quite different dosages so far, one working, one not yet.

I have a good feeling about the 20/20 dose though and hope this will be the magic number. As for the running out of meds though, is it possible to keep him on the 15 a couple of days longer and then jump to the 20 so that you can make up the extra and not run out rather than changing immediately? I would think this would possibly have more of a benefit to the 20mg program consistency than having a day off meds all together near the start. Just a suggestion, not sure obviously how many you have left.

I do want to wish you good luck with the 20mg doses, looking forward to hearing the great news that he is doing better. It's his turn remember? :D:D:D

[NoonelovesmelikeNorman]

Good News - Phone message from Normans vet, His meds came in :D:D
However, they mentioned that they were a 30 day supply of 30 mg tablets. :confused::confused::confused: I beleive that is the same dose that he already is on 15 am and 15 pm???

Not sure, he was given 20 mg quartered and I would give him 3 am / pm. so that was 15 mg am / 15 mg pm

My brain is not working.:confused:...The conversation I had with the vet yesterday she stated Norman would go on 20 mg am and 20 mg pm....and then if that didnt work they would go up to 30 am / pm.

So can someone help me decifer this...Did they order the same amount he is on currently? And if they did, please share with me how I go about ordering from the compounding site? What do I have to specifically do? Ask the vet for? or do I contact the compounding place first? I am hoping to get the order done ASAP so I can get Norman on the 20 am 20 pm schedule as the Vet agreed to do. What is the name of the site? and someone stated I would be able to get tablets? from them to spit as neccessary??

I am hoping they will allow me to pick up this script so Norman doesnt have to skip any days. :(

Thanks for the help!
Sharon

[Harley PoMMom]

I am not positive what your vet ordered, as it does sound like they ordered 30mg capsules???

When one wants to purchase their meds through a compounding pharmacy they do need a prescription from their vet. The vet can call it in or maybe the rx can be faxed.

Here is a link to a Thread where members do share their opinions on various compounding pharmacies: http://www.k9cushings.com/forum/showthread.php?p=57769&highlight=compounding+pharmacies#post57769

Hope this helps,

Love and hugs,
Lori

[labblab]

Sharon, from what you had told us earlier, it sounded as though your vet had already ordered the 30 mg. tablets last week before agreeing to increase Norman's dose to the 20 mg. twice daily. The 30 mg. tablets would have been handy if you were indeed going to stay on the 15 mg. twice daily dose (half a tablet this time around). But they are are not as useful at all now that you'll be increasing his dose since they cannot be split in such a way as to equal 20 mg. That's what I was concerned about last Saturday. :(

Under these circumstances, you need to call the vet back immediately and tell her you cannot accept and pay for tablets that you cannot use! Since she is ordering compounded tablets on your behalf, she herself should be able to put in a "rush" order for tablets of the correct dosing strength. Or if not, provide you with a prescription so you can order them yourself. I already know of at least one internet compounding pharmacy that sells trilostane in tablet form, but I want to call another one as soon as they open this morning in order to find out whether they do, too. As soon as I get that info, I'll post it here for you.

Marianne

[addy]

Hi Sharon,

It looks like Marianne and Lori were already here. We can try the pet pharmacy near my house to see if they make tablet form but he is expensive with compounded so I am worried about the cost. I'll call Jeff to ask. They open at 8am so I'll have to wait until I get to work.

We'll get it worked out Sharon, dont panic.

[labblab]

OK, I'm back again. Here's a link to one internet pharmacy that does make chewable tablets that can be split. It is Wedgewood Pharmacy in New Jersey, and they advertise chewable "Gourmeds." I just called them and they make trilostane in 20 mg. tablets, but not 40 mg. tablets. But since they are scored, you can split them in order to adjust dosages up or down in 10 mg. increments. They come in bottles of 30 or 100 tablets. Since you would be giving Norman two each day, you'd have to order the 100-tablet bottle. The bad news is that they wouldn't give me a price quote over the phone -- said they had to have a prescription in hand to do so. :(

http://www.wedgewoodpetrx.com/items/trilostane-gourmeds-chewable-tablets.html

So I checked next with Diamondback Drugs in Arizona. They are an internet pharmacy that many of our members use. Unfortunately, they only make capsules that cannot be split. However, I asked about their pricing, and you could buy sixty 20 mg. capsules (enough for one month at two a day) at a cost of only $31.50 plus approx. $6.00 shipping. Standard shipping time is 3-5 days. This sounds a whole lot cheaper than what you are paying now. And if need be and you ended up having to adjust Norman's dose up or down, you could buy additional capsules in a different strength to substitute or add.

http://www.diamondbackdrugs.com/contact-us/

If anybody else out there is using tablets that can be split, please let us know. Sharon, if you want to try these or any other internet pharmacies, give them a call first to find out the fastest way to order the meds. I'm guessing it will be to have your vet's office phone in the prescription.

Marianne

P.S.
The only way I can see of making things work with the 30 mg. tablets that your vet has already ordered is if she will order another bottle of thirty 10 mg. tablets to give you free of charge. That way, you can split all your tablets in half and combine 1/2 of the 30 mg. tablet and 1/2 of the 10 mg. tablet to come up with the 20 mg. you are needing!

[addy]

Hi Sharon,

Sorry to report, the pet pharmacy near my house only makes Trilostane capsuls.
Okay, worse case scenario, you will have to cut up the 30 mgs into weird shapes as Marianne has already pointed out. So you would have to take one 30mgs tablet and divide it in half so you have two 15mgs pieces. Then you would again have to cut another 30mg tablet in half for another two 15 mg pieces. Then you have to divide one of those 15mg halves into 3 equal pieces so you have to cut it into thirds. Each piece would then be 5mgs. You would then give ½ piece (15mgs) and one 1/3 piece (5mgs) twice a day for a total of 20mgs each morning and each night. The hard part will be cutting ½ tablet into 3 pieces.

I think that could could work, Marianne did I caluclate right? Im at work.

[NoonelovesmelikeNorman]

I am not positive what your vet ordered, as it does sound like they ordered 30mg capsules???

When one wants to purchase their meds through a compounding pharmacy they do need a prescription from their vet. The vet can call it in or maybe the rx can be faxed.

Here is a link to a Thread where members do share their opinions on various compounding pharmacies: http://www.k9cushings.com/forum/showthread.php?p=57769&highlight=compounding+pharmacies#post57769

Hope this helps,

Love and hugs,
Lori

Lori, do you know if any of the sites tablets and /or capsels? I have a touch of the flu today, but will look at the above link. I will leave later to get Norman's meds.

[NoonelovesmelikeNorman]

Vet office called the vet wants me to give norman a whole tablet in the morning and a 1/2 tablet at night.
Meaning now she wants to go from 15mg am / pm to 30mg am /15 mg pm....that is kind of a jump...I would have liked to do the 20 / 20 for at least a few weeks then go to 30 if there wasn't improvement. I do want to be cautious...I am taking the warnings given quite seriously. Last night when I called to question the dosage, in the message I asked about getting a prescription so I could order from one of the compounding sites and reduce the cost....Nothing mentioned about agreeing to that. Later I will check out the site Lori posted about compounding sites.

Last night I developed a touch of the flu...weird, it was like fever / heat was starting inside my ears and flowing out...that wasnt the worst of it...feeling better as the day continues..but not well enough to go to the pool (for sure) and really don't want to spread germs. I canceled dr appts today. Just going to get Norms meds and hang with the puppies...I hope I am well enough to par take in the healing seminar ... thanks for getting back to me gals..

Addy, still didn't find out when your little pup is having his procedure done...can you share with me.

Peace ladies...Thank you for your help. <3 Sharon

[labblab]

OK, I'm back again. Here's a link to one internet pharmacy that does make chewable tablets that can be split. It is Wedgewood Pharmacy in New Jersey, and they advertise chewable "Gourmeds." I just called them and they make trilostane in 20 mg. tablets, but not 40 mg. tablets. But since they are scored, you can split them in order to adjust dosages up or down in 10 mg. increments. They come in bottles of 30 or 100 tablets. Since you would be giving Norman two each day, you'd have to order the 100-tablet bottle. The bad news is that they wouldn't give me a price quote over the phone -- said they had to have a prescription in hand to do so. :(

http://www.wedgewoodpetrx.com/items/trilostane-gourmeds-chewable-tablets.html

So I checked next with Diamondback Drugs in Arizona. They are an internet pharmacy that many of our members use. Unfortunately, they only make capsules that cannot be split. However, I asked about their pricing, and you could buy sixty 20 mg. capsules (enough for one month at two a day) at a cost of only $31.50 plus approx. $6.00 shipping. Standard shipping time is 3-5 days. This sounds a whole lot cheaper than what you are paying now. And if need be and you ended up having to adjust Norman's dose up or down, you could buy additional capsules in a different strength to substitute or add.

http://www.diamondbackdrugs.com/contact-us/

If anybody else out there is using tablets that can be split, please let us know. Sharon, if you want to try these or any other internet pharmacies, give them a call first to find out the fastest way to order the meds. I'm guessing it will be to have your vet's office phone in the prescription.

Marianne

P.S.
The only way I can see of making things work with the 30 mg. tablets that your vet has already ordered is if she will order another bottle of thirty 10 mg. tablets to give you free of charge. That way, you can split all your tablets in half and combine 1/2 of the 30 mg. tablet and 1/2 of the 10 mg. tablet to come up with the 20 mg. you are needing!
Sharon, I think you must have missed seeing this reply I posted earlier. I agree with you -- I think you should stick with 20/20. So to make that work in any reasonable way with 30 mg. tablets already ordered, look at my P.S. above. If your vet is going to supply additional tablets to you, she definitely ought to discount any additional tablets you might need to order so as to dose Norman evenly and appropriately.

The thing is, the more splits you make in a tablet, the less accurate any individual dose is going to be. You just can't divide things that evenly. I wasn't even very happy with you trying to dose with quarter tabs. But splitting scored tablets in half is the least "bad" situation if you have to split at all.

What is so frustrating about this is that you could probably order a 100-count bottle of 10 mg. capsules more cheaply from Diamondback than what your vet is charging you for these larger tablets. Even if you can't split capsules, if you get them in 10 mg. dosing strength you will be able to come up with about any combination you could need just by giving more or less. I really do encourage you to call Diamondback to check their pricing so as to have the information all available to give your vet as a future option!

[NoonelovesmelikeNorman]

Thanks Marianne,
I just drove over and picked up the latest she ordered - Trilostane 30 mg - 30 count at $113.40 ..this is what she now wants me to do - give a 1/2 tablet in morning so 15mg - then whole tablet 30 mg. pm

I really doubt my vet will order anything free free me...However, she did come out so I asked her about ordering on line if she would give me a prescription, she didn't appear especially happy but did agree.

I am not very confident raising his dose drastically - kind of a jump now.
However, I do have some quartered 20 mg - making then 5 mg. so I could give Norman one of them and half of one of these - making them 15 mg for a total of 20 mg

Marianne and they rest of you Cushings Pro's what do you think about this idea? I probably could get three weeks of that dose out of what I picked up today and what I have now...then I would have to give a larger dose.

But hopefully by March I will have the money for an ACTH test somewhere....The $92.00 price looks real good compared to the $140 with a discount.

Thank you again for your guidance and input. I truly value all of it and the guidance, encouragement and support.

Sharon, Norman and Millie

[addy]

What is so frustrating about this is that you could probably order a 100-count bottle of 10 mg. capsules more cheaply from Diamondback than what your vet is charging you for these larger tablets. Even if you can't split capsules, if you get them in 10 mg. dosing strength you will be able to come up with about any combination you could need just by giving more or less. I really do encourage you to call Diamondback to check their pricing so as to have the information all available to give your vet as a future option!


Marianne is so right, I have to cut up Zoe's metronidazole and they never half right and I buy a new pill cutter once a month to make sure it is sharp, still dont half right.

So you are saying the vet wants you now to go to 45 mgs total and that is why she wont give you a prescription to use elsewhere?

I am sorry you are not feeling well, hope you get better soon. Zoe's surgery is on Valentine's Day:)

[NoonelovesmelikeNorman]

Marianne is so right, I have to cut up Zoe's metronidazole and they never half right and I buy a new pill cutter once a month to make sure it is sharp, still dont half right.

So you are saying the vet wants you now to go to 45 mgs total and that is why she wont give you a prescription to use elsewhere?

I am sorry you are not feeling well, hope you get better soon. Zoe's surgery is on Valentine's Day:)

Hello Addy,

Yes, kind of confused by the big jump now??? When I had to beg for 20mg am/ pm which I thought is what were going to do?

She seemed reluctant but did agree she would write a prescript. I have to see how Norman does....But I really am leaning on doing the 20 mg am/ 20 mg pm at least for as many days as I have before jumping the dose - that just doesnt seem safe as I think it is a BIG jump all of the sudden.

My hope is that 20 mg am/ 20 mg pm - works and then I will request the prescript from diamondback - even though they are capsules it would be 1/3 of the cost per month....more manageable. Unless, someone knows of a place that I could order the tablets just incase Norman needs to go up in dose I could go in 5 mg or 10 mg incraments...But lets not put the cart before the horse....Norman may do great on 20 mg am /20 mg pm :)

So this vet which was so cautious all of the sudden wants to jump big...I dont get it...:confused::confused:...

For now...I am happy Norman wont be without meds....I can stretch out the dose by doing the 20/ 20 and seeing how he does and that will give me time to come up with funds for more Meds (online as this $113.00 for a month supply is a lot, I just can't get that out of my budget montly and eventually I have to get both Millie and Norman in for a check up and what ever up dates they need - now I am getting overwhelmed so I will end this now) ...and to get a ACTH test done hopefully in March.

Thank you K9Cushing ladies and gents! Going to take a nap...to get back to feeling up to par.

Peace, Sharon :)

[labblab]

Sharon, I know you are not feeling well and I don't want to upset you by saying this -- but I do not understand how your vet can justify charging you such an excessively high price for those tablets. She knows how hard you are struggling, and that is a ridiculously high price for compounded trilostane. I just checked, and brandname Vetoryl capsules are even far cheaper than what she is charging you (I found thirty 30 mg. Vetoryl capsules online for $85!).

But since you now have them in hand, yes, I believe I would do just as you are suggesting: combine 1/2 of a new tablet with one of the 5 mg. quarters that you have left over so that Norman is getting 20 mg. twice daily. I would tell your vet, though, so she knows that's what you're doing. I don't want to advise you to do something different than what she has knowledge about. And maybe other folks here will have a diferent thought about the dosing.

But regardless of what you decide, in advance of the next refill I sincerely hope we can put the plans in place for you to order the medication yourself. The truth is, you would have the money to perform an ACTH right now if your vet hadn't been charging you such a terribly high price for Norman's medication all along. That just frustrates me to death!!

Marianne

[NoonelovesmelikeNorman]

Thank you Marianne for understanding my frustration, I really think the price was excessive as well. And yes, between the last three meds that would have been at least one more ACHT test and meds online....I have to get the meds online and most likely will switch to the other vet for the ACTH testing. My current Vet place is really new, all 3 younger new vets paying for a beautiful new building etc.

The changing of the decision charge me for the ACTH test after telling me they wouldnt. They know my situation... then going from insisting to ACTH testing, starting low low to start to a big jump... after telling me they would do 20/20....too much. I don't understand...But I am going to continue to try to do what I can for Norman.

What I know for sure... is that this group is a blessing and has helped me emotionally, mentally understand, has given me great advice with sites, compounding, friendship, understanding and just overall support. Norman is still here because of the guidance of this group. I am so grateful.

I just figured out the 20mg am /20 mg pm dosing with what I have in the 20 mg quartered. I have 21 days ....which will just about get me to March. I tried using a pill splitter for the 30 mgs I just picked up and the first one pretty much crumbled so I will have a tough time doing more than in half...by hand worked out better.

One day at a time....I am confident Norman will improve with the increased dose...hopefully 20/ 20 will be is dose to get him back to healthy and return to the Norman before cushings.

Thanks again,

With Love and Gratitude, Sharon, Norman and Millie

[molly muffin]

Hang in there Sharon.

Hugs,
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Sharon, I know you are not feeling well and I don't want to upset you by saying this -- but I do not understand how your vet can justify charging you such an excessively high price for those tablets. She knows how hard you are struggling, and that is a ridiculously high price for compounded trilostane. I just checked, and brandname Vetoryl capsules are even far cheaper than what she is charging you (I found thirty 30 mg. Vetoryl capsules online for $85!).

But since you now have them in hand, yes, I believe I would do just as you are suggesting: combine 1/2 of a new tablet with one of the 5 mg. quarters that you have left over so that Norman is getting 20 mg. twice daily. I would tell your vet, though, so she knows that's what you're doing. I don't want to advise you to do something different than what she has knowledge about. And maybe other folks here will have a diferent thought about the dosing.

But regardless of what you decide, in advance of the next refill I sincerely hope we can put the plans in place for you to order the medication yourself. The truth is, you would have the money to perform an ACTH right now if your vet hadn't been charging you such a terribly high price for Norman's medication all along. That just frustrates me to death!!

Marianne

I completely agree Mairanne....The Trilostane 30 mg - 30 count at $113.40 (IS NOT EVEN A MONTHS WORTH)- :rolleyes: if given at 1/2 tablet in morning so 15mg - then whole tablet 30 mg. pm :mad:

I am definately switching vets to the vet that only charges $92.00 for the ACTH test, I called and the Vet doesnt have a problem allowing patients to order online, He'll write a script. :D

I stated Norman on the 20 mg am / 20 mg pm - Drinking less, Hungry though (but he has been (hungrier) And only woke up twice last night :D:D:D:D:D...Happy mama!:D

Grandpa is watching the pupps while I attend a healing seminar - He will keep a very close eye on them - doesnt leave the house when he has the pupps and we are having a snow storm so he won't be going out for sure. I made everything real simple for him (daily am/pm medicaine holder) and he as directions plus he can call me. I also gave him the predisone (just incase)

Looking forward to having Norman tested in March...Hopefully!

I know Marianne already asked But does Anyone order tablets not capsels on line??? and what is the pricing like?? Name of the place?? I would kind of like to stick with what he has been taking as far as pill form, but will do what I have to, to make it work. ;)

Thanks all! Peace and Love,

<3 Sharon, Norman and Millie :)

[addy]

Sharon, I love seeing smiley grins on your thread.

Have a really good healing seminar!!!!

The roads are really bad, though, careful if you are driving.

[NoonelovesmelikeNorman]

Thanks Addy!....I love you! I thank everyone for the encouragement I ave received from this group...I feel Very Blessed ! :)

It was beautiful out last night...snow = slow. Heading off to the warm water pool before the long day begins...Seminar went pretty good last night.

Take care all! (((hugs))) and peace,

Sharon =)

[NoonelovesmelikeNorman]

Update on Norman - He seemed to be doing better at night and drinking less. He did great by my step-dads while I was gone to the healing seminar last weekend. looked good too when I picked him and Millie up - they did miss me... = ) as I did them.

However, he still is waking twice a night. Every once in a while I think I see blood in his poop. His water consuption is between 8 - 12 cups of water.

Now.. yesterday, he is super bloated (still is today) and he whinned last night for about 6 seconds then was fine. His appettite flucutates. is breathing is at times normal than at other times snorty, gaspy...not sure how to describe it.

I have to make an appt with the new vet. His expensive meds he recieved from the old vet won't last until the end of the month. Don't have the funds for bunc of testing and more meds.

The whinning has me concerned.:( ...as what may be blood in his stools - a couples times in the past week.
Bloating is normal right? Breathing I am not sure.

Any suggestions...??? Guidance..

I wish they could speak to us....He is laying down by my feet...like the normal healty Norman..just resing his eyes...most like waiting to see if Mom is going to get up..so he can follow me where I go.

Another note, my former coworker, close friend put er dog down earlier this week...I cried harder than when my mom passed...too close to home...Cancer in his lungs the doctor told them it would be weeks....They were going to put him down that night...but decided they had to wait...the next day - he was having a really good day...but they put him down that afternoon - he had been graoning when trying to get up and lay down. They are at peace... Beautiful golden lab - Luke... RIP Luke... I loved you too.

Thanks for listening and all of the advice so far.

Love, Norman and Sharon

[addy]

Hi Sharon,

I hope your retreat was enjoyable for you. Sorry to hear Norman is a bit under the weather. Blood in the stool can be caused by many different things. How is the rest of his stool? Are the blood drops bright red blood or is it dark tarry looking?

Since Norman was away for the weekend my first thought went to stress colitis or being fed something that did not agree with him. But it is so hard to say. I guess I am concerned that his tummy is bloated (does it seem hard?) and he whinced a few times. For Zoe''s colitis, a quick fix was always cutting back on her food by 1/2 or fasting her for twelve hours. But I cant advise that for Norman since I really dont know what is going on with him.

For the noisy breathing, I found this link when my daughter's pom was diagnosed with stridor

http://www.petmd.com/dog/conditions/respiratory/c_dg_noisy_breathing

Perhaps it will help you try to identify Norman's breathing sounds. Chewy's was a very high pitched wheezing caused by a dental probelm. Is this sound new for Norman?

[NoonelovesmelikeNorman]

Hi Sharon,

I hope your retreat was enjoyable for you. Sorry to hear Norman is a bit under the weather. Blood in the stool can be caused by many different things. How is the rest of his stool? Pretty normal size and consistancy, solid for him. Are the blood drops bright red blood or is it dark tarry looking? I would say neither bright red or tarry, more plain red..small amount not every time he goes but I would say 5 times in the past two weeks.

Since Norman was away for the weekend my first thought went to stress colitis or being fed something that did not agree with him. But it is so hard to say. I guess I am concerned that his tummy is bloated (does it seem hard?)not really ard full...very cushing-like and he whinced a few times. He only whinned the one time, last evening...for a few seconds, he was on my lap, so I put him on the floor and then he snuggle in a blanket, it was like a pain whine, but very briefFor Zoe''s colitis, a quick fix was always cutting back on her food by 1/2 or fasting her for twelve hours. But I cant advise that for Norman since I really dont know what is going on with him.Norman did eat shortly before so maybe his tummy was upset???

For the noisy breathing, I found this link when my daughter's pom was diagnosed with stridor

http://www.petmd.com/dog/conditions/respiratory/c_dg_noisy_breathing

Perhaps it will help you try to identify Norman's breathing sounds. Chewy's was a very high pitched wheezing caused by a dental probelm. Is this sound new for Norman?I checked out the site...Norman didnt seem to fit any of them. He is laying next to me on the couch...He is a nose breather...very slight sound at the moment. When I pick him up and hold im uprigt it is louder.

Thanks for responding...Sharon

[Squirt's Mom]

Hi Sharon,

I have two thought both of which I hope are very wrong. One is the possibility of pancreatitis. Is Norman walking in a hunched up manner at all - the back arched up?

The second is a condition called Bloat, or Gastric Volvulus. This is a life-threatening condition and requires immediate attention. The dog can have the distention (the gastric dialatation) without the twist (the volvuvus) but once the distention begins the twist usually follows and without intervention, the pup will likely not make it. Here is some info on Bloat -

http://pets.webmd.com/dogs/gastric-volvulus-bloat-dogs-life-threatening-emergency


Signs of Bloat

The classic signs of bloat are restlessness and pacing, salivation, retching, unproductive attempts to vomit, and enlargement of the abdomen. The dog may whine or groan when you press on his belly. Thumping the abdomen produces a hollow sound.

Unfortunately, not all cases of bloat present with typical signs. In early bloat the dog may not appear distended, but the abdomen usually feels slightly tight. The dog appears lethargic, obviously uncomfortable, walks in a stiff-legged fashion, hangs his head, but may not look extremely anxious or distressed.

We had a dog that got this. She didn't go into the twist, thankfully, but was at high risk by the time we got her to the vets. Her behavior was similar to what you are describing with Norman with the exception she would try to vomit and couldn't.

I'm NOT saying either of these are what is going on but the more info you have the better you can gauge what you are seeing and decide if you need to take action. ;)

Hugs,
Leslie and the gang

[NoonelovesmelikeNorman]

Hi Sharon,

I have two thought both of which I hope are very wrong. One is the possibility of pancreatitis. Is Norman walking in a hunched up manner at all - the back arched up?

The second is a condition called Bloat, or Gastric Volvulus. This is a life-threatening condition and requires immediate attention. The dog can have the distention (the gastric dialatation) without the twist (the volvuvus) but once the distention begins the twist usually follows and without intervention, the pup will likely not make it. Here is some info on Bloat -

http://pets.webmd.com/dogs/gastric-volvulus-bloat-dogs-life-threatening-emergency



We had a dog that got this. She didn't go into the twist, thankfully, but was at high risk by the time we got her to the vets. Her behavior was similar to what you are describing with Norman with the exception she would try to vomit and couldn't.

I'm NOT saying either of these are what is going on but the more info you have the better you can gauge what you are seeing and decide if you need to take action. ;)

Hugs,
Leslie and the gang

Hello Leslie! I am happy to say Norman doesnt fit either of the above desciptions.:) At least I don't think so... He only arches his back when he poops but not as much as he did when he was a pup....I need to read up more on the Bloat...Boy, I hope that is not it...
He has been more bloated like this on other days but then he goes back to not so bloated...He isnt whinning today...so hopefully this will get better.

I will keep a close eye and ear on on him...

Thank you Leslie....

[gummysmurf]

Hi Sharon,

Just checking in to let you know I'm thinking of you and Norman =)

[NoonelovesmelikeNorman]

You are so sweet...I should be checking in on you....Sorry to hear of Baxter's passing...That time was just crazy with my family and loved one all having surgery and then trying to cope with Norman's cushings situation. I am thinking and praying for you...I am always amazed on everyone's strength...It is helping to prepare me....:(

I noticed for the first time today Norman's skin on his back underside is flaky...I am not sure what to do for it?? If I should do anything? Norman's bloating is much better today...He slept until 4 am this morning. :D He is sleeping a lot today. I hope he is just resting to heal.

I filled is medicine container for the week this morning, I believe I will have enough medication for him until the end of the month...Maybe March 2. I will call the new vet who will only charge me 92.00 for the ACTH test and allow me to order his meds online...I am curious to see what he will say when he sees Norman...At times I feel the time is close :(:(:(

I don't have the funds like so many to do all that would help Norman's quality of life better.... Working on it every day....I know he knows I am doing the best I can...I am blessed for every day with him...I wish I had a camera to take some pictures or had the knowledge on how to take a video of him on my phone, although I dont think my phone plan allows it. Working on having some pict's of Millie, Norman and me taken by someone.

I know God has blessed me with Norman & Millie thus far. I am so grateful and that he guided me to this site...otherwise I wouldn't have this extra time with now.

Thank You, Peace, Love and Appreciation,

Sharon and puppies

[NoonelovesmelikeNorman]

Thanks to the generosity of others Norman is going into the Vet tomorrow to get an ACTH test at the newest Vet. I am so grateful. :):):) Norman is laying / resting next to me on the couch as check email and this site. He woke up twice last night, his appetitie is good, poop this morning - good, Drinking 8 - 12 cups...Urine pretty clear. skin under is bloated tummy slightly flakey.

He hasn't been seen since beginning of Jan. Swelling of his stomac grows and then receeds. About every two - thee days a notice a small amount of blood in is stool. Only once a day do I see any??
I will post the results when I get them...This office stated a couple weeks ago that they would be wiling to write/call in a script for Trilostane online - so that will be a tremendous help as well. :)

I met a person who is like a dog whisper...I am going to ask him the next time I see him if he would be willing to come over and see if he can sense anything from Norman. Another friend gave me a zero point energy wand...to use on myself and Norman...(doing everything that is offered for Norman and myself as I can afford it).

I feel so blessed for everyone who has helped me (in every way) help Norman through his cushings journey. God Bless You All! Thank you for all of the support, encouragement, advice, guidance and Love shown unto us - Norman, Millie and Sharon <3

[addy]

Good luck at the vet with Norman, Sharon.

[labblab]

Oh Sharon, good luck from me, too!!!!

Marianne

[mcdavis]

Hope all goes well for Norman at the vet's tomorrow.

[molly muffin]

Just saw your news. :) Yay, good luck to both of you!

Hugs
Sharlene and Molly Muffin

[NoonelovesmelikeNorman]

Thanks all...Waiting to hear from the Vet....I hope he calls now..since I am waiting for someone to jump my car - third time my battery hasn't started in the past month. :(

I feel very blessed and can't express enough how wonderful and supportive this group is. The knowledge you all share helps all of us newbies cope with an inconvienent and expensive diagnosis - but we have hope with the meds and support from all who ave experienced this disease with their pups. Thanks for all the pointers on how to manage the disease and the costs. I thank the Lord for directing me to the site. =)

The Vet said he was going to change Normans heart meds to someting that wasnt a diuretic (sp). He mentioned a heart murmur (sp). He also stated he would only have to use a very small portion of the ACTH testing drug so it would be as much - cost wise....And God Bless his soul - he said he would do a quick ultrasound on his belly to make sure there wasnt any fluid build up. He wouldn't charge me for that...Bawling at this point - I am so grateful for the help and generosity of others while Norman is on this journey.

God Bless you all. I will post the test results later today...have a Qigong healing appt and need to get to the Y - after I go to Sears to see what is up with my battery - it isn't that old so I hope they replace it. It is a DieHard.

Thanks again for all the words of encouragement for Norms and me. We're feeling the love and we love you right back. <3

Peace, Sharon - mama to Norman and Millie

[molly muffin]

Awwww Sharon. I'll just offer you a great big hug! That is awesome that he did a quick ultrasound at no charge!

hugs,
Sharlene and Molly Muffin

[Simba's Mom]

Sim and I sending hugs and prayers for Norman and you too!

[mcdavis]

Really pleased to hear that the appointment went well at the vets and keeping fingers crossed for a good result.
Hopefully this means that the new vet is going to work out better for Norman (and you) - I think it makes such a difference when you find a good vet that you can trust.

[NoonelovesmelikeNorman]

First of all I would like to thank everyone for the well wishes for Norman. :D He's feeling the love and prayers. :D

The Vet just called, He didn't state the baseline but Post was 9.6 - still to high. :(

He is suggesting having Norman stay at the 40 mg a day but just give in the morning as studies indicate and from his experience that dogs need to get peak blood levels - I questioned the full vs split dosing and he did state there is a sort half life in blood but the effect last londer than 12 hrs, what is important is reaching the peak level.

I think will gradually bring him up to the 40 in the morning. Tomorrow I will start him on 30mg trilostane and then 10mg pm...until the I run out of the meds I have or the new meds come in....I prefer to be more cautious.

As far as ordering online - he suggested Canadian pharmacies, although he also mention Wedgwood (they order from them) He is also familiar wit diamondback and another one....He is going to do some research and call me tomorrow to check on the dosage amounts, tablets vs capsules and pricing. :)

He also believes my other vet most likely got Normans meds from a compounding pharmacy as well - upsets me to think that they charged me such an outrageous amount when the got it most likely much much cheaper.:mad:

He suggested taking Norman off the fluromusite (?) water pill and put him on Anilapril (sp) which should help his heart condition more and decrease urine output. That prescription he is pretty sure can be picked up at Walmart very reasonably. :D:D

And finally, the ultrasound which he did for no charge :D:D Showed no indication of fluid build up in his stomach...Just cushings bloating, that when on the correct dosage, that should decrease in time.:D

Thanks again for the well wishes for Norman. :D

Love, peace and gratitude, Sharon, Norman and Millie

[scoora]

Sounds like Norman has a very helpful and caring vet.
Wishing you and Norman all the best.
Big hugs.

[lulusmom]

Hi Sharon,

I don't have a lot of time but I wanted to tell you that I was glad to hear that you are not taking your new vet's recommendation to give the entire 40mg in one dose in the am. I personally would not switch Norman to once daily dosing at all at this point in time. If Norman were my dog I'd talk to my vet about increasing the total daily dose to 50mg, half in the morning and half in the evening.

Glynda

[labblab]

Hi Sharon, I only have a minute to post this morning, but I do want to agree with Glynda's recommendation that you stick with the twice daily dosing, especially since one of your issues is the need to get a restful night's sleep.

But additionally, I want you to make sure your vet is aware that there is a warning about combining enalapril with trilostane. It is a type of "Ace inhibitor," and Dechra has a specific warning that Ace inhibitors can combine with trilostane to lower a dog's aldosterone too much, resulting in problems. This is not an absolute contraindication, and we do have members who are using both drugs with their dogs. But it is a warning to keep in mind and I'd want to make sure your vet is aware of this issue before switching Norman over. Here's the specific quote from the product insert for Vetoryl:


Ace inhibitors whould be used with caution with Vetoryl Capsules, as both drugs have aldosterone-lowering effects which may be additive, impairing the patient’s ability to maintain normal electrolytes, blood volume and renal perfusion. Potassium sparing diuretics (e.g. spironolactone) should not be used with VETORYL Capsules, as both drugs have the potential to inhibit aldosterone, increasing the likelihood of hyperkalemia.

Furosemide is not in the class of potassium sparing diuretics, so as far as I know, there is no contraindication against using it with trilostane. So that may be why your first vet selected it.

Marianne

[Boriss McCall]

yay! so glad Norman got a good report. :D
I have to say I prefer the twice a day dose. Boriss seems so much more settled now that he is on the correct dose & at twice a day.

[addy]

Hi Sharon,

I am so glad things seem to be falling in place for Norman. Did the vet saying anything about the blood in his stool?

Besides the concern Glynda has already voiced, my question would be if Norman may be starting to show signs of gastro problems, the twice day dosing allows you to not hit his little gastro tract all at once; especially if you have to start using higher doses where those side effects may occur.

Just a thought. I know you are in an awkward spot as he is trying to be sensitive to your financial situation.

[NoonelovesmelikeNorman]

Hello All and Thanks for the words of advice... I did try to get tablets but no go.

The vet is sending a prescript for 40 mg capsels to diamondback. Starting with 30 of them incase we need to go up. He is pretty insistant on having the dose once a day.... If I had tablets I could adjust slowly and do am/pm but that wasn't an option. 40mg capsel in the am. If that is not enough, he is going to 60mg - as that is where he should be for his weight.

Norman was already on 40mg tablets - 20 am / 20 pm. Yesterday I switch him to 30mg am /10mg pm I can do this until my tablets are gone.

I will keep a close watch on Norms...when the switch occurs... A little nervous about it. Both dosage and new drug..:(

He wasn't overly concerned with the blood in his stool at this time. If it is every 3 - 4 days of once in a while.

I'll call about the drug interaction now...Thank you for sharing your knowledge...bless you, bless you all.

Norman and Millie's Mom

[Mel-Tia]

I wish these vets would listen. We know our animals it is such a tough thing to deal with already

In my personal experience Tia was much better on twice a day also.

How much is the split dose? Is there a way of donating via this site as I would be willing to get Norman a months worth if we could arrange it

I am not rich by any means but I know first hand how every little thing with this disease is a worry so if I could help little Norman in honour of my Tia then lets figure it out

Xx

[lulusmom]

Sharon, I have to tell you that your new vet is not acting in Norman's best interest and I am very concerned that you are placing blind faith in him to know what he is doing. Norman's post stimulated cortisol was a hair away from being within an acceptable level and if he doesn't crash from an overdose, it will be by the Grace of God, not because this new vet knew what he was doing. You better hope Norman doesn't crash and end up in the ER because that's going to cost a heck of a lot more than an acth stim test. In my opinion, your vet should have prescribed a dose or doses that was low enough to use in multiples to attain the dose Norman will eventually need to stabilize.

[labblab]

Sharon, just to clarify, you are not actually increasing Norman's dose at this time -- just shifting from 20 mg. twice daily to 40 mg. once daily? If so, my biggest worry right now will be that he will start needing to go out more often in the night again :(. But once having made this switch, I assume you'll be leaving him alone for awhile to restabilize, and then performing another ACTH before increasing the dose? Because otherwise I agree with Glynda as to worry over suddenly increasing his dose again by another 20 mg. (jumping up to 60 mg.).

Marianne

[NoonelovesmelikeNorman]

Did I mention how Grateful I am for this group. :D:D:D

Special thanks to Glynda for helping to explain to my Vet the concerns shared by the group. :D I Love you! and Norman Loves you as well. :D:D I have to say I also do love my new Vet, Doctor Travis, for all the wonderful, generosity, and patience he has demonstrated..:D He called me 2 - 3 times yesterday and called Glynda. I have to respect his knowledge as well....He is the Vet I am a newbie to all of this and dont always explain this well. I am just trying to do what is the best for Norman.

Yes, Marianne - Norman was on 40 split - the last couple days I was giving him 30 am 10 pm. This morning I gave him only 30 mg am. I wont give him anything tonight...I am kind of expecting him to wake up more at night as it is a lower dose...but I hope I am worng...I'll try the 40 mg if /when needed, but before going up to 60mg I will have to have another ACTH test - I know I ave to be caucious with Norman's dosing.

After speaking to Glynda, Dr Travis called me back stating he will be ordering 30 mg capsules for am only. no pm dosing - I'll give that a try. :) Glynda somewhat agrees. If this dosent work than I ope we go to 40 am only and if that doesnt work I would like to go up to 50 but split the dose adding 10 mg at night.

Dr. Travis's experience has indicated that dogs need to get enough at one time period in the day to acheive the desired result...Is that correct Glynda?? He hasn't seen the success with split dosing and that is why he dosent want to go that route.

Norman woke up once last night. He was given 30 am /10 pm. Today will be his first day on 30 mg am. The dosage is going down from 40 mg split. I also have to call with the spelling of the heart meds and he will double check the side effect. He explained there were other options but felt the drug he was referring to would work best. He is willing to check into it more....:D He is being patient and taking a lot of time for Norman and me. Feeling grateful and blessed. :)

Thank you all for the support, suggestions, encouragement....I am so Grateful for this site and the Love and friendship. Bless you!
Now I have to head to the pool...Thanks all!

With Love and appreciation,

Sharon, Norman and Millie