Jesse just diagnosed with Cushings

[Patricia ann Wh]

Wow, am I happy to get on board with all of you. You have no idea how I felt when I couldn't find the Cushings forum.
To get to my story, my border collie, Jesse, had ALL the symptoms - 2 vets missed it, and I finally went to a specialists, he was 99 % sure Jesse was a cush dog but said that I should do nothing, that the drugs would kill him for sure. I came home and found the cush forum and then I was in doubt after reading for days and days. But --- he is the specialist !!??
Well, my dog has gone down hill so much in that time I knew it was time to do something for my beautiful guy.
Jesse is 15 - pancreatitis (I feed small tiny meals throughout the day - lots of enzymes and a chinese remedy for gallbladder/pancreatitis. Other than that, hes beautiful. Well - he was till 1 month ago when the hindend weakness started to set in. He's 88 lbs (10 of that is his belly, he may not be a purebred - he's a pound puppy) His blood work was good.
I see I should post the dex test (8 hour) I'm not really sure what to copy
pre dex 7.6
post 4 hour 8.4
post 8 hour 8.8
I actually had a vet in the town over do the test - but after listening to her - she has treated one dog and had alot of problems getting the dose right she hadn't thought of using compounding pharmacies and said she usually doesn't treat cushings dog - just lets them live it out - after reading the cush forum - I decided to find another vet - this all happened yesterday.
So now someone I saw 5 months ago that has never treated a cush dog is going to help us. (NO vet in my area has treated with trilostane or many cush dogs for that matter - I called everyone.)
Yesterday - I called the trilostane co and told them about the stories I've read here and asked "what's up with the inconsistant dosages" he said "yes - we may be making changes" - WHEN?????
I was pretty upset and he gave me the name of a vet in New York - Mark Peterson - I called him and asked if he would work with a vet if I find one.
He said he would - and the vet near me siad he would work with him too.
So I'm waiting for a call from the vet near me - as we speak.
Has anyone read or heard about retinoic acid www.antechdiagnostics.com
Oh - I'm so nervous and scared for my boy. He's my whole life.
I want to thank "KIM" if it wasn't for her I would have never been able to figure how to get on this site. Thank you so so so much Kim.
Patti and Jesse

[Squirt's Mom]

Hi Patti! :)

I am so glad to see that you and Jesse made it here! :D Kim is an angel, huh? And so is Natalie for giving us this spot.

First, some questions....whoopie! :p Is the test you posted the low dose dex? Is this the only test Jesse has had? (If so, you do not want to start treatment just yet!) Does Jesse have any other health issues beside the Pancreatitis? Is he on any other meds, supplements or herbs at the moment and if so what for? What diet/feed is he on? What signs does Jesse exhibit? What prompted you have him tested in the first place?

Cushing's is a difficult condition to diagnose and it takes a series of tests to get a definitive diagnosis. The tests that are used are the LDDS (low dose dex), HDDS (high dose dex), and ultrasound. We also strongly suggest the full adrenal panel from the Uni of Tn in Knoxville (UTK) especially if one is planning to use Trilostane. Trilostane always elevates one or more of the intermediate or sex hormones. Pups can have these other hormones elevated, which is a condition called Atypical Cushing's, and the Trilo will probably make things worse instead of better as it will increase instead of decrease these hormones. Atypical presents with the same signs as conventional Cushing's but is treated differently.

As for being scared of the meds. I understand that as they are powerful drugs. But it isn't the drug that needs to be feared; it is inexperienced vets, or those who don't follow the established protocols for diagnosing the disease, and/or administering and monitoring the meds. When you hear of something going wrong with treatment the cause can usually be traced back to the vet or the lack of diligence on the parents part, which is usually because they weren't told what to look for by their vet. If handled correctly, the treatments are no more dangerous than aspirin, which can be deadly, too, if misused. ;)

One thing you need to understand is that Trilo is no safer or less toxic than Lysodren even tho many vets and parents seem to think so. Trilo has not been around as long as Lyso and therefore does not have the track record that Lyso does and fewer vets are familiar with it. As Trilo is used more and more, I feel you will hear more and more horror stories about it. Trilostane had its own peculiarities, too. Both drugs are life savers in the hands of an experienced vet and diligent parent, but do not be mislead into thinking Trilo can't cause the same issues that Lyso can.

I understand fully how distressed you are over this whole thing with Jesse. I was a total basket case when my Squirt was diagnosed! :eek::confused::( For weeks on end all I could do was cry, then for months I cried off and on as I tried to understand what was happening to my Sweet Bebe. But my head was so frazzled I couldn't understand a thing that was being said or that I read. It was all GREEK :confused: and scared the crap out of me! :eek: Then I finally found cc.net and these wonderful folks took me in and gently led me along until I started to understand a tiny bit. They have continued to lead me, teach me, and hold my hand to this very day, 13 mos. later. The pros here (which I ain't! :p ) are simply amazing and are more than happy to share their experiences, knowledge and support with any who ask. We are here to learn, share and care together, and I am glad you and Jesse have joined our little family.

The most important thing you can do for Jesse is to educate yourself on Cushing's. You are his first and last defense, his only voice, his advocate, and the more you know, the stronger you will be in these roles. There will be a list of links at the end of this post to get you started. Please ask any questions you have and we will do our best to help you understand. There is no such thing as a "dumb" question! That is how we learn.

Again, I am so happy you found us and I really look forward to learning more about you and Jesse in the future.

Hang in there!
Hugs,
Leslie and the girls

:eek::eek: the links :D:D

General Cushing's info:

Kate Connick*
http://www.kateconnick.com/library/cushingsdisease.html

Long Beach Animal Hospital*
http://www.lbah.com/canine/cushings.htm

Drs. Foster and Smith*
http://www.peteducation.com/article.cfm?c=2+2097&aid=416

Newman Veterinary*
http://www.newmanveterinary.com/CushingDiag.html

Cushing’s signs and pics*
http://www.newmanveterinary.com/CushSignFrame.html

BMD Health Library*
http://www.bestbeau.ca/bmd_health_links_4.htm
(scroll down to see Endocrine Diseases)

Mar Vista Animal Medical Center*
http://www.marvistavet.com/html/cushing_s_disease.html

Vetstream*
http://www.vetstreamcanis.com/ACI/February08/VMD2/FactSheet052.asp

Atypical Cushing’s*
http://veterinarynews.dvm360.com/dvm/article/articleDetail.jsp?id=485128&sk=&date=&pageID=1

http://www.vetcontact.com/en/art.php?a=132&t=

UT Panel
http://www.vet.utk.edu/diagnostic/endocrinology/treatment.php

[labblab]

Hi Patti!

I only have a moment to post, but I wanted to welcome you, as well. :)

And also to tell you that if "YOUR" Mark Peterson is "THIS" Mark E. Peterson, DVM -- you should be in great hands!! :) :)

Diagnosis of Hyperadrenocorticism in Dogs (http://www.journals.elsevierhealth.com/periodicals/ysvms/article/S1096-2867(07)00008-4/abstract) (I'll try to locate and post the entire article later on...)

Best wishes to you and Jesse, and I'm so glad you've found us.

Marianne

[Buffaloe]

Hi Patti,

Welcome and I am glad you found us. If your Mark Peterson is the same one I am familiar with then I think you will be in very good hands.

I just wanted to point out that the results of your low dose dex. test indicate the possibility that Jesse could have an adrenal tumor. There was no suppression after the injection of dexamesthasone, the second and third numbers are higher than the first. This test cannot diagnose an adrenal tumor but it can indicate the definitel possibility. By far, the best way to determine if Jesse has an adrenal tumor is a high quality ultrasound. I think this is something you should address with your professionals.

All the best to you and Jesse.

Ken

[frijole]

Patti! It is Kim!

I have a 15 min break for lunch but I am so relieved you got the posting thing down. Way to go! We all started somewhere. Couple thoughts -

First off - I hope that vet that Marianne linked you to is the same as the new one you found. You'd be in super hands it would appear.

Second off - what are the symptoms that scare you the most right now? Is it the hind leg weakness? My dog had it too and with treatment it slowly went away. Is there anything else?

Cushings is often not diagnosed because it mimics old age and vets don't notice all the signs we do. I think my poor girl had it for many years before we accidentally discovered it. So don't be worried that you have to medicate TODAY. It is important to make sure that:

1. the diagnosis is right
2. you understand the disease and the medication

First step is coming on here and posting what you did. Be sure to read the links and ask lots of questions. There are no stupid ones. We have been there.

I have never heard of that testing company you linked. Why do you ask?

Thanks for taking the time to find us.
Kim

[frijole]

Hi Patti,

Welcome and I am glad you found us. If your Mark Peterson is the same one I am familiar with then I think you will be in very good hands.

I just wanted to point out that the results of your low dose dex. test indicate the possibility that Jesse could have an adrenal tumor. There was no suppression after the injection of dexamesthasone, the second and third numbers are higher than the first. This test cannot diagnose an adrenal tumor but it can indicate the definitel possibility. By far, the best way to determine if Jesse has an adrenal tumor is a high quality ultrasound. I think this is something you should address with your professionals.

All the best to you and Jesse.

Ken

Thanks for looking at that Ken. I am at work and don't have the chart to look at. I was hoping someone would help her. Glad you found the site too!

Kim

[Patricia ann Wh]

Hi Kim, Yes the hind leg weakness is scaring me the most.
He drinks a gallon in 24 hours, yet he will still holds it for ever it seems.
And his belly is swollen and I feel so bad because I can't feed him too much, I don't want him to put weight on. I make his meals, so now its chicken, fish, veggies,fiber, enzymes, and a host of supplements, (I've had a few holistic vets that taught me well in the food and supplement dept.) one was a former partner of Dr. Martin Goldstein.
Jesse did have an ultra sound and it looked good. I'm still waiting for the vet to call me, he is supposed to send the reports to Dr. Peterson to be reviewed by him. I'm sitting on pins and needles waiting and can't stop crying. I can't believe the complications involved with this disease. Yes, Jesse may have had it for a while. From reading a post response it sounds like the trilostane is just as scary as the lysodern. Boy, now I'm really scared !!!. The link is a diagnostic lab with trilo info and also a very expensive drug by Roche - retinoic acid, the write up sounds excellent. My vet said there hasn't been much testing - but it seems from what I've read that they are using it on infants. The more reading the more overwhelmed and scared I'm getting. I'm hoping to get some positive feedback too. I feel so helpless - I need to do the best for Jesse because he counts on me for everything, as he should.
Thank you Kim - you made me feel better

[Squirt's Mom]

Hi Patti,

Our intent is NOT to make you more scared but to make you aware. :o

Knowledge is power they say, and that is never more true than when dealing with Cushing's. I really, truly wish we could say, "Oh, don't worry, this is nothing to concern yourself about. Whatever you do will be just fine. Any ole' vet can handle Cushing's and any med will work like a charm on your Jesse", but that would not be fair to you or to Jesse. Cushing's is complicated and requires a good, Cushing's savvy vet and an educated parent. BUT that doesn't mean there is no hope. We have had many, many pups get diagnosed and be treated with no troubles whatsoever and go on to live many more years on treatment, happy as can be. When I say many more years, I mean just that...many more. We had one member who's pup lived 12 years after diagnosis and treatment and another who's pup lived for 8 more. These are only two of the examples from our group and there is no telling how many more are out there we have never met who have had the same experience.

What is important is that you can make informed decisions about Jesse and his care. That is one of our purposes here, to inform you about what we have learned to help you avoid some of the mistakes we have made.

It looks as if the Dr. Peterson you and your vet will be working with is THE Dr. Mark Peterson. You will be in some of the very best hands in the canine Cushing's world with him and I hope that in itself will help you have less fear. You and your vet will learn a great deal from him and be able to help others as a result. In fact, you will be teaching us things before long, I have no doubt! :)

We all understand how scary this is right now and I want you to know that you can talk to us about your fears any time, not just things pertaining to tests, treatments, etc. While we do our best to provide accurate information, there is just as much to be offered from the human level. That doesn't require anything but caring about each other, and we do care about you and Jesse. Once you introduce yourselves to us, you are family and like family, we may not always agree, but we always care.

Hugs,
Leslie and the girls

[Squirt's Mom]

Retinoic Acid as a Novel Medical Therapy for Cushing’s Disease in Dogs
http://endo.endojournals.org/cgi/content/full/147/9/4438

[Wylie's Mom]

Hi Patti & Welcome,

I'm sorry I don't have time to read & write...gotta finish my taxes:eek:! I'm just glad you found us (we were waiting for you);)!

-Susy

[lulusmom]

Hi Patti,

Have you had any luck in getting copies of Jesse's test results so you can post them here?

I hope that you are coping much better at the moment. I know that when my second dog was diagnosed, finding cc.net saved me from being carted away by the little men in white coats. :D While I can't vouch for anybody else, I think I've got both oars in the water now. I meant it when I told you that cushing's is usually a lot tougher on us parents than our sweet pups. They just sit there and go dodeedodeedo, where's the food, where's the water? ;)

Hope to hear from you soon.

Glynda

[frijole]

Patti,

Greetings from me as well. Looking forward to hearing how you and Jesse are doing.

Kim

[Rusty's Mom]

Patti,

Wow, home-cooked meals and all - Jesse is so lucky to have you as a mom!

Please hang in there. I know it's frustrating when you want to be proactive and you don't have the medical support behind you. It sounds as though you're on the right track now.

I just wanted you to know you're in my thoughts and prayers!

MJ

[Barney's Mom]

A cushing's diagnosis for your pet is very scary and overwhelming. Finding good veterinary care can seem almost impossible. I have been right where you are with my dog. I was so afraid to give him lysodren, I was afraid I would miss the signs and symptoms that loading was complete and that I would harm him. I tried Trilo for a brief period, but that wasn't the drug for my boy due to pre-existing renal problems.

With the members of this board for guidance and a competent vet, you'll be just fine. Someone once told me that we have never lost a dog during loading here at cc.net. That made me feel 100% better. Use this board to bounce ideas off other members, and if something doesn't sound quite right, you'll know it.

My 12 year old border collie had really bad hind leg weakness until treatment. It didn't do completely away but it is so much better. It was so bad at one point that we bought him shoes so he would get better traction.

I attributed many of the signs and symptoms of cushings to old age. It was nice to see my boy get his spunk back :)

Good luck to you and I look forward to hearing more.

Cheryl

[Squirt's Mom]

Hi Patti,

How are you and Jesse doing? Hope all is going good! Would love to hear from you!

Hugs,
Leslie and the girls

[Patricia ann Wh]

Oh- All of you are so wonderful - your kindness and caring brings me to tears, literally.
Because this story has taken so many twists turns due to veterinary politics - with no consideration for my Jesse, I haven't responded, #1 its so complicated #2 my heart is being ripped apart and I haven't had the mind or strength to e-mail.
As of this am. - I had to get a new vet- yes, it sounds as though you we're right, Dr. Peterson ordered a new ultrasound to look at the adrenals. and a acth stim.
I was able to find someone (last ditch effort) to do a ultasound today.
My other vet decided to go on his vacation (he never told me!!!!) so he wanted to wait till next mon before we proceded with anything!!!!
Roadblock after roadblock - at the expense of Jesse - its really vet politics.
Thank you Border Collie mom - I really needed to hear that- your words are giving much needed strength. Thank you from the very bottom of my heart.
I'm waiting for a call from Dr. Petersons office - he may or may not still work with me, he feels out of courtesy he should wait for my vet to return.
Jesse is getting weaker and drinking more water by the day.
Everybodys feelings - except Jesse.
My vet should have told me 3 weeks ago he was going away, but he waited till last Thursday night to tell me.!!!!! Talk about courtesy!!!!!!!!
(Did any of my story even makes sense) Ohhhh Boy
I have to go now - thank you all.

[Squirt's Mom]

Hi Patti,

SO good to hear from you again!!! :D I was getting a bit worried. :o But I'm one of the resident worry-warts. :o

Bless your heart....so many difficulties at the beginning of an already scary situation. :( But keep in mind that Cushing's is slow progressing disease, so a few more days shouldn't hurt Jesse. I know it is hard to see him feeling badly, but you've gotten the ball rolling and soon he will be on his way to an answer. The good thing is, he has no idea what is happening and so doesn't worry...he will leave all that up to you! :p Your love and devotion will see him through these trying days and one day soon he will kiss you in gratitude for helping him feel better.

Meantime, let him have all the water he wants. If he needs help getting up or moving around, you can fashion a sling from a soft sheet, blanket, towel, etc to give him a bit of support. If he is peeing in the house alot, you might get some of those bands for male dogs. Folks that use them have told me they work great! One friend puts an open diaper inside the band for added absorption and to keep the band drier. Don't make any changes to his diet or routine right now. Let him do what seems to comfort him and bring him some happiness.

You will get through this, sweetie, and we are with you as you progress along this Cushing's path. Write when you can.

Take care and keep your chin up! You are doing a fine job, so don't despair.

Hugs,
Leslie and the girls

[frijole]

Heh Patti - it's Kim! Glad to hear an update... was worried. As Leslie said the sonogram can probably wait. OR you could let the vet know you don't care to politely wait... ;) While not a cure, I give my dog milk thistle for her liver. It comes in capsules. I get it from the health food store. I empty 1/2 of the capsule with her am meal and the other 1/2 at night. It helped her numbers come down after being on lysodren for quite a while so while I'm no scientist, I personally believe it has helped her liver.

Let us know what you decide to do. Hang in there and feel free to post all you want - we have seen and heard it all, trust me! :D

Hugs
Kim

[Buffaloe]

Hi Patti,

I hope your ultrasound is crystal clear and you get a confirmed diagnosis for Jesse. I am also hopeful that Dr. Peterson will continue to work with you. I've read alot by him and he seems extremely knowledgeable and he sounds like a really good guy. I know how difficult it is when you see your beloved pooch not doing well but you gotta hang in there. You may have your confirmed diagnosis later today and if not, then real soon.

Ken

[Wylie's Mom]

Hi Patti,

Are you planning to have an ACTH stim done, too? If so, are you going to do it through Univ. of TN, Knoxville (the UTK full adrenal panel that includes the ACTH stim)? This is what Leslie had told you about previously. The UTK panel should be done before treatment with Trilostane.

-Susy

[Patricia ann Wh]

Hi Suzy, Yes the acth stim test was done today.
My vet said the ultrasound (2nd one) did not show abnormal adrenals.
He said all the organs looked good, the ultrasound is being sent to Dr. Peterson today or tomorrow as well as the acth test.
I will talk more tomorrow. I'm so exhausted.
My Jesse is getting everything I've got.
Someone mentioned the peeing, we're lucky (hes lucky) the front porch is partially enclosed and carpeted, he sits all day watching neighbors and the goings on, so to pee or poop he goes down his ramp ( I built it last year) and he's all set. He stays around on his own - no need to watch Mr. Jesse.
Thank you all again, You are all angels.
Patti and Jesse

[Wylie's Mom]

The ultrasound report sounds great:D!

And it sounds like Jesse has "The Life". That's wonderful that you made a ramp. I bought one about 1-1/2 years ago for Wylie to get in & out of my Jeep Cherokee - because he had started to hesitate when jumping down. I'm so glad I have it now with all the vet visits he now has.

Can't wait to hear what Dr. Peterson says.

-Susy

[Patricia ann Wh]

Has anyone heard of this being used??
google - antech diagnostics - retinoic acid cushings treatment

http://www.antechdiagnostics.com/clients/antechnews/2008/dec08_01.htm

Well, still waiting for the ultrasound to get to Dr. Peterson and also the acth stim test results.

I'm glad to know you will all be there when the tests come back.

Thank you all, Patti and Jesse

[Wylie's Mom]

I know that people here have heard of it, but I believe no one here has tried it or knows of anyone trying it.
-Susy

[lulusmom]

Hi Patti,

I've read a number of abstracts for that study. It was a 2006 study done at the University of Buenos Aires and I was really excited when I read the first abstract. I got even more excited when I saw that it actually shrinks the size of the pituitary tumor (adenoma). We've all been so heartbroken over the loss of many cushdogs with macroadenomas so the prospect of a treatment that reduces cortisol as well as shrinks the tumor had me soaring with hope. I sent an email to Dr. Jack Oliver at the University of Tennessee to determine if they were doing any studies on this treatment and he responded that UTK does want to do their own study but he didn't know when that would be. Since the study was done in 2006 with such promising results, I asked why we aren't seeing more about it. He said more research needs to be done but he doesn't think anyone is pushing it because of the expense factor.....it is very, very expensive. I was pretty bummed. :(

I am sure that you are anxious for Dr. Peterson to confirm the diagnosis and believe me, I'm going to be on pins and needles too. Not every member is fortunate enough to have a world reknown expert on the case so we'll all be looking forward to your updates.

Give that beautiful Aussie boy a big hug for me.

Glynda

[Squirt's Mom]

Hi Patti,

Try this link; I think it is the one Glynda is talking about. I tried to post it earlier but am not sure it worked 'cause when I tried it just now, it didn't. This one did in the preview!

Retinoic Acid as a Novel Medical Therapy for Cushing’s Disease in Dogs
http://endo.endojournals.org/cgi/content/full/147/9/4438

Hugs,
Leslie and the girls

[Patricia ann Wh]

Hi Glynda,

I was sure you had heard of retinoic acid.
http://www.jci.org/articles/view/11098

When I read about it , I called the local pharmacy and asked the price - $3,000 FOR 100 PILLS, WOW, then I thought - Canada ! I could get it for 1/2 price. Something like $1,400. My mom said she'd split it with me.
(We would both live in a tent if we had to for Jesse.) We don't agree on everything - (we live together) but when it comes to our furry friends, the sky is the limit.
I called all over CT and no one has used it - they said probably because its so expensive.

I thought I would add this.

I'd been giving Jesse a few supplements I had read about for about a month or more. ( I knew it wasn't a cure all)
2 weeks ago when the blood tests started I backed off as to not alter the tests. I wish I hadn't because all the symptoms exhasberated within a few days of backing off.
When I started back up a few days ago - the symptoms calmed down.!!
Coincidence?? I don't know - but I don't think so.
Here is what I had been giving him.

http://dogtorrx.com/recommend.php?lang=en (read Ackerman)

I did call Ackermans office to confirm they are using the formula.

Seriphos phosphorylated serine
http://www.drdebe.com/phosphorylatedser.html

Jade Spring teapills
http://www.heavenearthchineseherbs.com/jade-spring-teapills-p-142.html

Well, lets see what tomorrow brings - my vet should be calling and Dr. Peterman is off tomorrow, he will call Friday.(I still couldn't get any test results)

Glynda - I thought this was interesting.
When I talked to someone at Dechra - I was told Peterman has treated more dogs with trilostane than anyone around - Petermans secretary told me he's only treated a few dogs with trilostane - but - she said he is the spokesman for Dechra. It seems as though there are alot of twists and turns when it comes to Dechra.

Its 2:00 am, oh, I'm not on pins and needles. Not much.
I don't ever remember being this nervous about anything in my life, but then - I've never met anyone like Jesse in my life either.

Thank you all again, Patti and Jesse.

[Patricia ann Wh]

Hi Everyone,
Well, it is now 6:30 am and Jesse is on his cushy carpeted front porch, out there since 11:00 pm, he just went down to pee now . 7 1/2 hours
(I sleep from 7 pm till midnight and come down and keep my eye on him till morning, my mom has the 6 - 12 shift.)
At 2:00 this morning I mentioned a few supplements.
I have to say a little more about them.
Jesse had his first uti in Sept. (I think) that was the 1st sign of cush. looking back. he was on antibiotics, which I hate, the uti came back a short while later. I started looking for something else - anything besides antibioitcs.
Here is the answer. Right here.!!! Mesosilver!!

http://www.colloidsforlife.com/silver_Kidney_Infection.html

Hes been on silver since Sept. - I have his urine checked every 3- 4 weeks and the test comes back - "perfect" everytime. ( I always read dogs with cushings have constant uti's.)

Also - as I said before this thread, when I stopped the supplements, things skyrocketed.( I thought it was a coincidence) After last night and yesterday I'm TOTALLY CONVINCED THEY HELP - ALOT!!! Last night is the first night THIS WEEK he went without peeing in his sleep. He HAD NOT EVER peed in his sleep before this week - he would go 6-7-8 hours !!!!(but because the water consumption went through the roof as I said) he began to pee in his sleep when I stopped the supplements. Also, yesterday he took 4 little walks by himself around the yard (like he used to), the week off the supplements (last week) he did not take one walk!! He barked at everyone that went by yesterday , (he barely took notice of anyone this past week)
and - he was much more calm the last two nights. No question. And the water drastically dropped yesterday. My mother took notice too, she said "don't ever stop those supplements again!! She said you could see it in his eyes yesterday - he was just plain feeling better.
I think the drugs are necessary - BUT - I definitely think with the proper supplements - the dosages can be reduced.
Read dogtor rx - Dr. Ackermans study.
My background is holistic - Jesse is really holistic - he hasn't had a vaccine since he was 2 yrs old. ( my vet at that time was a Cornell vet teacher, he taught me alot, he was actually Dr. Martin Goldsteins partner )

I'm not saying to not use the drugs - I'm just saying that from what I witnessed this past week - all of these things made a HUGE difference - no question in my mind.

I'll be interested in your feedback.(sorry its so long)

Patti and Jesse

[jrepac]

The retinoic acid link is really interesting...I am surprised it has not been tested yet here in the states. Silver for UTIs, I think has been around for some time...it just gets overshadowed by other methods.

I agree, each case is different, and some dogs respond to various supplements or combinations thereof. I've had great success with cranberry extract tabs....they've prevented additional UTIs in my 12yr old female Aussie (Mandy).

I'm using supplements for the liver, a glucose control vitamin, and an herbal mix, in tandem with generic Anipryl. It has proved effective, but hard to say what drives what.

I added a dose of melatonin (3mg) in the evening this week....after reading some promising stuff on it. At the very least, it seems to provide her with a very restful sleep!

I look forward to hearing/seeing more on Retinoic acid.

Jeff

[Patricia ann Wh]

Hi,

Oh - just reading more, I wish I could read more success stories.
Waiting for the vets to call - it should be tomorrow.
Am I right - is lysodern prescribed more for adrenal and trilostane more for pituitary??
It seems that there are so many bad reactions - at least from what I'm reading.
Maybe I should stop reading. But I have got stay informed to know what to watch for - right??
Dear Lord help me - to help my Jesse.

[frijole]

Patti,

Trust me there are many many success stories and you are so organized and willing to research and learn that I just know Jesse will do just fine. Yes and No - Lysodren seems to work better for dogs with adrenal. It works equally effective as trilostane for pituitary. It is usually the vet's preference that has dictated lysodren vs trilostane selection. Lysodren has been on the market far longer. The toughest part is loading but it is totally manageable and we will hold your hand throughout so don't you worry a bit.

I remember you saying you walk Jesse alot and his hind legs have gotten weak. This is very common and the shaking/weakness does take some time to go away... seems like it was between 30 and 60 days for my dog. So it isn't overnight but it does start making them feel better pretty quickly.

We have so many wonderful stories on the other forum... but we promise to continue to share our experiences with you. My dog Haley has been on lysodren for 3 years now. No one even knows she has cushings. Shes just getting old is all.

Hugs
Kim

[Patricia ann Wh]

Kim - thank you so much for that.
Big Hugs Right Back Atcha !!

[lulusmom]

Hey Patti,

Holy cow, that is outrageously expensive. I'm not sure that even if additional studies showed good results, that many vets would consider it as their first line of treatment as the vast majority of their patients could not afford it. Retinoic acid must be one of those things that is extracted from some rare plant that only sprouts on the river banks of the Amazon every five years but only for five minutes on a full moon and when all the stars are aligned. That would certainly explain the huge price tag.

I see you called Ackerman's office to make sure she was still treating dogs with Dogtor RX but did you ask if she did acth stimulation tests to determine if it actually reduces the cortisol? That is so key and something that is never divulged in the adds for these types of supplements. I did however do a bit of research on Dogtor RX and the main ingredient is extract of fertilized eggs. It looks like Mount Sinai Hospital in Canada did some human clinical trials that showed some significant decrease in depression. Not sure that has anything to do with adrenal hormones but I was thinking of myself actually. :D It also appears that the only real adverse effect noted was an allergy to egg whites. I've provided a link for that study below.

http://clinicaltrials.gov/ct2/show/NCT00446719

When you say that Jesse seems to improve with Dogtor RX, what symptoms are improved and which ones haven't? I'm asking because quite frankly, if my dog were very senior like Jesse and I found a benign alternative treatment that greatly improved his quality of life by significantly reducing the symptoms common in cushing's, I would definitely think twice before deciding to treat with Lysodren or Trilostane.

I had no idea that Dr. Mark Peterson was Dechra's spokesperson and man, you would certainly think that he would have prescribed it to more than a few dogs. :confused::confused::confused: Dr. Edward Feldman, another world reknown expert, said that he thinks Trilostane is an excellent treatment; however, he still prefers Lysodren because he knows the drug, is comfortable with it and has prescribed it to his patients for over 35 years. I wonder if Dr. Peterson doesn't share his feelings??

Hang in there, Patti. This is the worst phase of the disease....out there twisting in the wind, trying to make decisions that you can't really make until you know what you are dealing with so aaarrrggghhh!

Glynda

[ventilate]

I can see Glenda is as concerned as I about using treatments other than the tried and proven medications. My concern with using these meds is that it reduces the symptoms but not the cotisol level. Be sure you mention to the vet that you are using these supplements as it can potentially complicate loading, if you are using lysodren or just watching for the signs of the dog having to much trilostane. When we begin treatment we watch for lethargy, not eating , a decrease in water consumption just to name a few to tell us the levels are getting close to getting to low. The supplements you are giving you say have reduced the symptoms of cushings so it will be very difficult to tell when you dog has had enough or to much of the cushings medications, the levels may be dangerously low before any signs or symptoms show.
I am glad you have found something to keep your dog comfortable but please believe if is to good to be true it usually is. Sitting here with you waiting to hear from Dr Peterson....
Sharon

[jrepac]

I'm still wrapping my head around the "fertilized eggs" thing...how does that help, I have to wonder? I had looked at Dogtor RX before as well. Yet, there are success stories...like folks who have used supraglan, cushex, etc., etc.

I'll add that to the list with dandelions, daisies, arsenic, sulphur and happy thoughts!

Relieving symptoms is not all that bad, quite honestly. If the cortisol is not sky-high, the symptoms are a big part of the battle. As many know, higher than normal cortisol actually helps with other problems like arthritis...

I just wish there was an ez test to monitor cortisol levels daily (like a urine test strip). At least we would know where things stand, particularly if one is not using lyso or trilo, the proven cortisol lowering agents. It is frustrating when the pup appears to be doing well, but other signs (or tests other than ACTH or Low Dose Dex) may suggest cortisol is high...but you don't know exactly how high it is. Don't want to have to do ACTH or LDDS tests all the time...they are too stressful and expensive.

[Patricia ann Wh]

Glynda,

That is the first time I have laughed in a long time.!!!!
Thank you so much. That was really funny.
I'm sure Peterson is a lyso man too. Its understandable. We'll see tomorrow.
Yes, you're right about the supplements changing the dosage, thats important.
That's why I stopped in the first place (because of the blood work)
No - the supplements do not stop the disease, I think they help - well - they do help - but I would not tell anyone to rely only on supplements

I'm hanging in by a tiny little thread Glynda, I don't know how you've done it - you are a terrific mom. And you are a terrific spokesperson for cush puppies.
You are a blessing . Thank you, Patti and Jesse

[frijole]

Yeah Patti, Glynda is "special". ;):D:D:D:rolleyes::eek::eek::D:D

But we love her anyway.
Kim

[lulusmom]

I'm hanging in by a tiny little thread Glynda, I don't know how you've done it - you are a terrific mom. And you are a terrific spokesperson for cush puppies.

Like Kim said, I'm special. :D Seriously, Patti, we've all been hanging from that same tiny little thread in the beginning. I still remember how totally terrified I was when Lulu was diagnosed. I was addled and had knots in my stomach for weeks and bigger than usual bags under my eyes from crying. Once we got passed all the testing, the sticker shock and the lysodren loading, it was like a huge weight was lifted from my shoulders; however, I wasn't totally comfortable with things until I was able to wrap my arms around the disease and the treatment. My arms were never long enough until I found these fine folks who helped me stretch them a bit and gather up a lot more knowledge. It has been a humbling experience to say the least.

We're all here now so you and mom don't have to do this alone. Hugs to all three of yous guys and keep the updates coming.

Glynda

[Patricia ann Wh]

This is from cslabs.co.uk AT HOME TESTING

Urine Cortisol:Creatinine Ratio & Dexamethasone Suppression Test
When Cushing's disease is strongly suspected, this is a test that can be used when the dog is easily stressed as all the sampling is done at home by the owner and samples sent on to the lab together.

1. Day 1, collect a first morning urine sample.

2. Mix the urine and half fill Sample Tube 1, place in the fridge until dispatch.

3. Day 2, collect a first morning urine sample.

4. Mix the urine and half fill Sample Tube 2, place in the fridge until dispatch.

5. Immediately after urine collection, note the time and give the dog the required number of Dexamethasone tablets (dose = 0.1mg/kg).

6. 8 hours later give the dog the 2nd set of Dexamethasone tablets.

7. 16 hours later give the dog the 3rd set of Dexamethasone tablets.

8. Day 3, collect a first morning urine sample.

9. Mix the urine and half fill Sample Tube 3, place in the fridge until dispatch.

10. Send all 3 urine samples straight to the laboratory for UCCR test.

Interpretation
HAC is suspected if the UCCR is greater than 30 x 10-6 in two consecutive morning urine samples.

If the UCCR in the 3rd urine sample is depressed by 50% of the mean UCCR of the first two samples, PDH is the likely diagnosis.

If the suppression is less than 50%, an endogenous ACTH is suggested to confirm an adrenal tumour.

Normal dogs will have a UCCR less than 10 x 10-6. PDH or ADH dogs usually have a UCCR greater than 30 x 10-6.

Canine Hypoadrenocorticism - Addision's Disease
Addision's Disease - Primary hypoadrenocorticism results when more than 90% of both adrenal cortices are destroyed and this leads to a clinical deficiency of all adrenal hormones.

The ACTH stimulation test will provide confirmation of Addision's. It is also useful to measure the Sodium/Potassium ratio.

Interpretation
The basal cortisol will be low with little or no response after ACTH. A classic Addision's ACTH response test would be Pre cortisol = <20 nmol/L, Post cortisol = <20 nmol/L.

Handbook Index

Introduction
Canine Thyroid
Feline Thyroid
Equine Thyroid
Canine Adrenal

Hyperadrenocorticism
ACTH Stim Test
Low Dose Dex Test
High Dose Dex Test
Endogenous ACTH
Cortisol/Creat Ratio
Addisons
Feline Adrenal
Equine Adrenal
Adrenal Misc
Reproduction Male
Reproduction Female
Pregnancy
Gastrointestinal
Other tests
Therapeutics
Reference ranges
Research assays
Clinical trial assays
References
Sample required

[Patricia ann Wh]

WOW - I just called my new vet that rushed Jesses ultrasound and acth stim test this week to talk to him - and - guess what - he's gone till next Thursday. !!!
He never said a word!!
(If you've read my saga you'll remember my last vet did the exact same thing, he went on vacation and told me the night before he left too.)
The plan was for him to talk to Dr. Peterson today!!!!
I just called Peterson's and his secretary was shocked too.
He saids Peterson was going to call my vet and go over the tests with him and decide what to do today.
Is this some kind of sign.
Roadblock after roadblock.

[frijole]

Luckily that secretary already knows what you have been thru... I'd try to get the results straight from the expert and cut out the guy who bolted on vacation. That is unfair. You can't be expected to wait another week. I am confident you will get them to share the results. ;) You are a great advocate for your dog Patti. hang in there and let us know what happens.

Kim

[Patricia ann Wh]

I picked this up yesterday at the office of my new vet that flew the coop till next Thursday

Corisol Pre 5.9
Cortisol 2 26.7

Some other vet up there told me that the adrenals were both very slightly enlarged but that was indicitive of pituitary.

Peterson's secretary said that Peterson did look at Jesse's test but would call the first vet (that also flew the coop for a week without telling me)on Monday or Tuesday.

By the way, I wish you could have all been there - the stand in vet told me to go ahead with trilostane - not to ever use lysodern - he said they don't call it ODD for nothing - he said the DD stands for DEAD DOGS, in fact every dog he's treated with lysodern has died. !! (That is exactly what he told me)
I could start with 120 a day if I wanted - I mentiond davis' protocol and he said well - if I want - start at 60 a day, or 30 a day, he said to go with whatever I felt more comfortable with - he would leave 30's 60's and 120's all at the desk - take whatever you want he said.

Are you beginning to see why I called Peterson, not that he is panning out either now. The vet thats returning from his vacation on Monday has never treated a dog with trilostane and he also has lost 3 dogs to lysodern.
Can you see where my fear comes from now.
Remember, this all started (or didn't start) with the expert specialist endo. in west hartford that told me to NOT treat cushings!! the drugs would kill him before the disease he said, reading the forum (whherever that went) is the only thing that kept me searching, and watching my dog - lets just say getting sadder. God - I LOVE MY JESSE BOY.

[frijole]

Patti,

I can totally understand your frustration as those comments about all of their dogs dying from lysodren is crazy - unless of course they are not following protocol and are over or under dosing all of them. ;) But you are armed with knowledge.

The results you shared are from the acth test. The first number really doesn't matter. The 2nd number means the cortisol is elevated and could be cushings. You mentioned the adrenals were slightly enlarged (both). I believe that does indicate pituitary but I am hoping to get confirmation from others. Did they ever do the 8 hr test (LDDS)?

So what is the next step? Wait for your vet to return or did you leave with the trilo?

Hug Jesse for me!
Kim

[Patricia ann Wh]

Hi Kim, Yes we did the 8 hour.

here is what I'm looking at.

Pre dex 7.6
post 4 hour 8.4
Post 8 hour 8.8

Does that mean anything to you??

Thank you , Thank You, for responding.
Did I tell you 2 ultrasounds and both vets didn't see a problems with adrenals
(adrenal cushings).

[Roxee's Dad]

Hi Patti,
wow what a vet!!!!!:mad::mad::mad::mad::mad: Pretty much giving you the okay to use whatever dosage you want:mad::mad:

As you know there are plenty of Lyso and Trilo success stories here:D:D:D

some do better on one than the other. I personally don't use Lyso but although I do see some improvements, I am contemplating depending on Roxee's next stim which I am also considering a UTK panel. I will be discussing future treatment soon with some of the other more experienced people here.

I caution you to not jump the gun here. As you know Cushings is not an immediate death sentance and it takes time to do it's damage. Be absolutely sure of the dx and the proper treatment with protocol followed correctly.

The stand in vet, well, I would mention your conversation to your regular vet as he is totally out place saying that and if all his dogs died from using lyso, I wouldn't let him check my pups heartbeat:mad::mad::mad::mad:

Hang in there, I'm sure the others will chime in to help you sort this out. Your doing a fine job of learning and questioning everything. Knowledge is power (to save your pups life) and keep your sanity.

Wishing you and Jesse all the best. (Don't rush into anything)
John (Roxee's Dad)

[frijole]

Patti - I do not have my LDDS chart "handy" right now but those numbers do not look indicative of pituitary to me. Unfortunatley I am heading out to an appointment but I will return later to check to see if anyone else has had time to look at those numbers and comment.

Cushings is sometimes difficult to diagnose and frankly thats why the forum was created to begin with... so you aren't alone. I would personally not give a drug yet.

I promise I'll check back in later today! Sorry I have to run.

Hugs
Kim

[Patricia ann Wh]

Your the third person to say it may not be pituitary, if its not - then what?
These things always happen on the weekend it seems.
The ultrasound s don't come up with other organ problems, liver, kidney great, so they say, could it be something totally different, even with the potbelly, thirst, hunger, panting.??

[lulusmom]

Hi Patti,

I think cushing's savvy vets should grow on trees right next to the money tree that cush parents need to get their babies correctly diagnosed. :D


I picked this up yesterday at the office of my new vet that flew the coop till next Thursday

Corisol Pre 5.9
Cortisol 2 26.7

These numbers are definately consistent with cushing's. Some other vet up there told me that the adrenals were both very slightly enlarged but that was indicitive of pituitary.

You mentioned is another post that somebody said both adrenals were enlarged. Bilateral enlargement of the adrenals is common in PDH; however, there have been cases of adrenal tumors in both adrenal glands. I am assuming that the ultrasounds were done on a high quality, high resolution machine and that the findings were interpreted by an experienced radiologist? Did you get copies of the findings so you can post them here or did your vet(s) pass on the information? In your position, I would be very interested in the ultrasound as the LDDS results you posted are more inidicative of an adrenal tumor.

Peterson's secretary said that Peterson did look at Jesse's test but would call the first vet (that also flew the coop for a week without telling me)on Monday or Tuesday.

By the way, I wish you could have all been there - the stand in vet told me to go ahead with trilostane - not to ever use lysodern - he said they don't call it ODD for nothing - he said the DD stands for DEAD DOGS, in fact every dog he's treated with lysodern has died. !! (That is exactly what he told me)
I could start with 120 a day if I wanted - I mentiond davis' protocol and he said well - if I want - start at 60 a day, or 30 a day, he said to go with whatever I felt more comfortable with - he would leave 30's 60's and 120's all at the desk - take whatever you want he said.

Oh my gosh, this vet is unbelievable! Did you know that the actual percentage of dog whose death is attributable to Lysdoren is minute...something like 1%? Let me just say that there is no way on earth that I would let this vet touch one of my cushdogs.

Are you beginning to see why I called Peterson, not that he is panning out either now.

It sounds like Dr. Peterson is the only medical professional involved in Jesse's case that knows anything about cushing's and the appropriate treatment for your boy. I would certainly not start treating with Trilostane until you or your scarey vet gets direction from him. I so wish you could travel the 2 1/2 hours to meet face to face with him. You may want to reconsider doing just that. I pack a lunch when I take my two to the IM because the specialty hospital is far away and it's usually a several hour appointment. Just like you, I learned that not too many gp vets have the experience necessary to diagnose and treat a cushdog; however, I've never run into any that were quite as scarey as the ones you've had. It's worth the time and travel to me to make sure my dogs are in the best hands possible.

The vet thats returning from his vacation on Monday has never treated a dog with trilostane and he also has lost 3 dogs to lysodern.
Can you see where my fear comes from now.

Absolutely and I would also fear for any cushdog that might walk through his door. :eek:

Remember, this all started (or didn't start) with the expert specialist endo. in west hartford that told me to NOT treat cushings!! the drugs would kill him before the disease he said, reading the forum (whherever that went) is the only thing that kept me searching, and watching my dog - lets just say getting sadder. God - I LOVE MY JESSE BOY.

I really hope that you hold off on treatment until you can talk to Dr. Peterson. Sorry for forgetting to send that bio that I ran across. Better late than never ya know.

http://www.hypurrcat.com/bio2.html

Glynda

[lulusmom]

Your the third person to say it may not be pituitary, if its not - then what?
These things always happen on the weekend it seems.
The ultrasound s don't come up with other organ problems, liver, kidney great, so they say, could it be something totally different, even with the potbelly, thirst, hunger, panting.??

If it's an adrenal tumor, surgery could be a permanent cure if Jesse were a good candidate for surgery. If surgery isn't an option, then Lysodren would be the appropriate treatment for an adrenal tumor.

Most often, dogs with cushing's have some type of liver abnormality. Are you sure the ultrasound showed a perfectly normal liver? I think there is pretty good evidence that Jesse has cushing's and that cortisol is elevated which would explain all the symptoms you mention above. However, any one of the other adrenal steroids and hormones can cause those symptoms too, especially if estradiol is elevated. Whether one or more of the other adrenal steroids and hormones are also elevated can only be determined by having a full adrenal panel done by the University of Tennessee.

Trilostane does a beautiful job of reducing cortisol but it always increases one or more of the other adrenal hormones. If a dog already has elevated hormones, you can rest assured that you'll probably see symptoms return at some point down the road as Trilostane will exacerbate the condition. I am a firm believer that, without exception, this panel should be done before starting Trilostane. Lysodren, on the other hand, does a great job of controlling all of the adrenal steroids and hormones so I wouldn't necessarily pay for this test if I chose to treat with Lysodren.

Glynda

[Patricia ann Wh]

Hi Glynda,

Oh Thank You for getting back, Can you believe these guys??

Yes, I will have to wait for Peterson, it would have been nice if he could have talked to me too, in fact when I called he picked up the phone and asked my name, I recognized his voice from a much earlier (quicky) conversation. When I said my name he quickly handed the phone to his secretary.
I called back at 4:30 - he had just left for the weekend, to return - I believe she said Tuesday.

So - the numbers sound like pituitary. Both ultrasound people supposedly are very good, they've been around a long time. Both agreed on the adrenals.

It seems like lysodern does have more severe side effects ( if used improperly) and with the scary scary stories these vets have with lysodern - can you see why I'm leaning towards trilostane.

The more I've been reading - low dose seems the way to start out.
Patti and Jesse

[Patricia ann Wh]

Glynda, Should the lower number be from 1 to 5 ??
When it gets normalized??
Jesses is 26.7
Holy cow - is that really high??
Wait, I think I read someone said they've seen the numbers higher.
Oh - sorry I'm confusing myself now.(probably everyone else for that matter.)
Glynda, Petersons office is in Manhattan - right smack in the city!
It would be - maybe 3 hours with the traffic - and the weather is getting really hot - unfortunately, just too much for Jesse I 'm afraid.
But - Boy - do I hear ya.

(I'm not sure I'm posting in the right places)
Should all my questions be posted on Patrica Ann White site??

[Barney's Mom]

Hi Patti,
wow what a vet!!!!!:mad::mad::mad::mad::mad: Pretty much giving you the okay to use whatever dosage you want:mad::mad:

As you know there are plenty of Lyso and Trilo success stories here:D:D:D

John (Roxee's Dad)

OMGosh! I can't believe he said that! That was really irresponsible of him. I definitely wouldn't want him to treat my dog! As John said, there are lots of success stories here with dogs treated with either drug.

If you are in tune with your dog, and you know what to look for, and are paying attention to how your dog eats, drinks and behaves, either drug can be given safely.

Cheryl

[Barney's Mom]

Hi Patti,

I think cushing's savvy vets should grow on trees right next to the money tree that cush parents need to get their babies correctly diagnosed. :D



Glynda

Wow! Well said! That should be my sig :D

[Kwiggles]

Hello Patti,

I just wanted to say hi and offer a little moral support here for the decision-making process you are going through. A few weeks ago, I was right where you are and I know how confusing it can all be when you are trying to make the best decision for your pup.

My dog Joe had very similar numbers on his bloodwork as your Jesse but we could not get a good look at both his adrenals at ultrasound, so his diagnosis (adrenal or pituitary) is still up in the air. My vet suggested we go ahead with Lysodren loading as this would help relieve his symptoms while we are still trying to get a good visualization of his adrenals.

As someone who has just recently used Lysodren for the first time, I totally understand your trepidation in using it but I am here to say it can be used safely and effectively.

But I also want to say that before starting Lysodren therapy (or any other Cushings drug) you really need to get your dog under the care of a vet who is competent and knowledgeable and willing to make himself/herself available to you for consultation when you need them. Of course, I don't personally know any of the vets you have dealt with, but I think that to go off on vacation for a week without giving you any warning is unprofessional and rude (and just plain wrong!):mad:

When I was preparing to start Joe on his Lysodren loading, my vet provided me with a 4 page detailed protocol with specific dosing instructions, a supply of Prednisone and clear instructions on signs of over-loading to look for, as well as his home phone number in case I had an after-hours question or emergency. I was in touch with him by phone and email throughout the process. And despite my anxiety, Joe came through it just fine. Ideally, I think that's the kind of care you are looking for and I would encourage you to hold off on starting meds until you can find a vet who is really going to be there for you and Jesse.

Lysodren is undeniably a powerful drug but used carefully it can do so much for the quality of life for our pups. Joe just completed Lysodren loading 6 days ago and started his maintenance dose yesterday and already his water consumption is down by about 1/3. His appetite is coming down to something near normal (no longer ravenous all the time) and he seems to just be feeling more comfortable in general. And we are hoping for things to just keep getting better and better :)

Regarding the toxicity of Lysodren, my vet said he has never had a dog under his care die due to Lysodren treatment and in fact, has never had a serious (i.e., life-threatening) case of overloading. The key is in experience, knowledge and paying close attention.

Patti, I would echo what many others here have said- hold off any treatment until you find a vet to work with with whom you feel comfortable, also keep coming back to this board- there are so many caring and knowledgeable people here who will support you and help guide you toward the right treatment for Jesse. Hang in there, it really does get better! :)

Hugs and good wishes from Karen & Joe

[lulusmom]

Hi again.

Jesse's pre cortisol draw 5.9 which is within the normal range. His post
cortisol draw was 26.7 is high which is consistent with cushing's. We've seen dogs as high as 50 so don't go stroking out on us. :D

If you can't get to Dr. Peterson, I highly recommend that you see if you can find another internal medicine specialist closer to home. Here is a link that can help you find one near you. I saw that there are more than a few listed in CT so I hope one is closer to you. Call and interview them. Ask how many cushdogs they treat, both past and present, what treatment they prefer, etc. There is no doubt in my mind that you know what questions to ask.

http://www.acvim.org/websites/acvim/index.php?p=3

Glynda

P.S. You are posting in the right place

[Patricia ann Wh]

Oh Glynda,

Somehow you actually manage to make me laugh.
No, no stroking out, who would yell at the vets??
Thanks for the link, I'm going to check right now.
You are the best Glynda,
Thank you for the support Karen and Joe
Kim - I wouldn't be here without you.:)
Thank you everyone !!!!!!!!!!!!!!!!!!!!!!!!!:)
Alot of my panic is in having clowns for vets, and I have called everyone around and asked the" questions" they all have the same stupid answers.

Patti and handsome Jesse
I haven't figured out how to put those little faces in - or I would.

[frijole]

Patti it is very normal to get confused at the beginning because there are so many tests and so many numbers. You'll be a pro by next week. :D

Re the first 8 hr test that was done - can you please read on the report and confirm that the name of it the Low Dose Dexamethasone Suppression test? I want to be sure. The results of 7.4,8.6,8.8 do not fall on a diagnosis for Pituitary cushings. I want to be sure we are talking the same test since there is also a HIGH dose dex test. FYI the LDDS test is considered to be the most reliable test for differentiating between pituitary and adrenal cushings.

The 2nd test that you had done was the ACTH and that measure cortisol. The first number you can ignore. The 2nd number of 26.7 is "not high for a dog with cushings". ;) A normal dog has a level of 22 or less. The poster on the other thread that said that number was very high hadn't read your thread and was assuming you had already started treating and so she was comparing that number to the desired level of 1 to 5.

Regardless of which drug is chosen the goal is to lower the 26.7 number to a lower range (normally between 1 and 5) So after treating you do ongoing ACTH tests to confirm your dog is maintaining the lower level. I hope this explains all the numbers...

I agree with Glynda - you need someone that knows what they are doing and can help you should you need help. Saying all dogs die is ludicrous and unacceptable. A good vet is more important that your choice between lysodren and trilostane.

The drugs work differently but have been equally effective from what we have seen. I am repeating what Glynda said a few posts ago because I want to make sure it is clear:

I think there is pretty good evidence that Jesse has cushing's and that cortisol is elevated which would explain all the symptoms you mention above. However, any one of the other adrenal steroids and hormones can cause those symptoms too, especially if estradiol is elevated. Whether one or more of the other adrenal steroids and hormones are also elevated can only be determined by having a full adrenal panel done by the University of Tennessee.

Trilostane does a beautiful job of reducing cortisol but it always increases one or more of the other adrenal hormones. If a dog already has elevated hormones, you can rest assured that you'll probably see symptoms return at some point down the road as Trilostane will exacerbate the condition. I am a firm believer that, without exception, this panel should be done before starting Trilostane. Lysodren, on the other hand, does a great job of controlling all of the adrenal steroids and hormones so I wouldn't necessarily pay for this test if I chose to treat with Lysodren.

We have been able to watch dogs take both lysodren and trilostane over the years. Trilo was very very new when I came onto the board 3 yrs ago. What scares me about it is exactly what Glynda said above. We are just now seeing cases where dogs that were having success with trilo are having to go off of it and onto lysodren.

Yes the way lysodren works seems scary but it is truly a miracle drug and it has given my dog 3 additional yrs (and counting). Loading can be stressful but that is where knowledge on your part and also the vet comes in. You simply monitor and when in doubt you stop giving the drug and do another ACTH test to see where the cortisol level is. Better safe than sorry.

Sorry this is so long but I wanted to get back to you and also to make sure you understood what Glynda was pointing out. Thanks!

Kim

[Roxee's Dad]

Hi Patti,
Good to see you have so much support here. Keep strong and don't be afraid to question your vet. I have, and have switched to a vet that had experience with cushings. Even with his experience, I still put him to the test and not afraid to question his recommendations. He was put off at first, even reminded me he went to school for this stuff. Anyway, we get along just fine... he even knows he has to fax me all Roxee's test results before he even calls me to discuss. Turned out to be a pretty good guy. I was able to do this with the support of this group/forum and reading all the links provided to me by this group. It is unfortunate that cc.net is gone, otherwise you would be able to read so many, many success stories.

My point is....... you are writing the check and you have a right to question or even interview other vets to check on their experience. The finality of it all is that you are the boss and make the final decision. Don't be intimidated. Be strong for your Jesse.

Keep up the questions and good work. Your doing good. You have alot of good, caring, and knowledgeable people on your side.

Hoping and praying for the best for you and Jesse.
John (Roxee's Dad)

[ventilate]

not to ever use lysodern - he said they don't call it ODD for nothing - he said the DD stands for DEAD DOGS, in fact every dog he's treated with lysodern has died. !! (That is exactly what he told me)

I am SOOOOO glad this was not my vet, my dog has lived 3 years on this ODD drug, ohhhh vets like that just fly all over me..... Maybe he should learn how to use the protocols properly, the way he told you to pick which ever dosage you want tells me he doesnt have a clue and obviously does not gobby the tried and proven protocols.
was going to bed as I have to be up at 0445 tomorrow to work but had to write as I would not be able to sleep with out sending my 2 cents in.

After this so called cushigs expert, i do understand your frustration in trying to find someone you trust to treat your dog. I can only wish you the best of luck and if you were closer to me I could help you out but Asheville is a long ways away but come on down and I'll hook you up:D

Night folks
Sharon
now I can sleep

[Roxee's Dad]

Hi Patti,
The little faces are off to the right side of the area that you type your new post in. As you write a new post..... look directly to the right and you will see an area with the faces and titled smiles. put the cursor where you want the face and click on the smile of your choice.;)
Good Vet :D
Bad Vet :mad:
Jesse pooped on the floor :o
All the Best.
John (Roxee's Dad)

[Patricia ann Wh]

Hi,

I've been waiting - many many delays, I only have a moment here.
Peterson called one of the vets - he said Peterson said - Jesse should be on 90 milligrams of trilostane once a day.
Once a day???
http://www.flowertownanimalhospital.com/trilostane.html

I would love to hear the responses.
Glynda, Kim , Cheryl
Talk to me. :confused::confused:

Patti and Jesse

[Patricia ann Wh]

Oh - One more thing - in case I didn't mention it - Jesse is 88 lbs.
I swear - mostly belly.
I don't know - Peterson is the "expert" . Also, Dechra spokesman.:rolleyes:
The 2 times a day dosing just makes more sense to me.

Patti

[labblab]

Hi Patti,

The once vs. twice daily dosing question is one that has a lot of us scratching our heads around here. I don't know whether you've had a chance yet to read the referenced dosing and monitoring guidelines on our "Trilostane/Vetoryl Information and Resources" thread. If not, you'll definitely want to take a look:

http://www.k9diabetes.com/forum/showthread.php?t=745

Even though we are aware of research studies over the last few years that advocate twice daily dosing, as far as we know, both Dechra and also UC Davis still recommend first starting with once daily dosing, and then advancing to twice daily dosing only in the event that symptom patterns and/or test results indicate that it is advisable. We know that the Dechra info is current. We are not so sure as to the current recommendations of UC Davis (the journal article on our "Information" thread dates from 2007).

Fortunately, another member here is currently in contact with a vet at UC Davis, and she has agreed to ask him whether they have updated guidelines available for us to see:

http://www.k9diabetes.com/forum/showthread.php?t=847

So stay tuned, and perhaps we'll have more info available shortly.

Marianne

P.S. Given Jesse's weight, 90 mg. is a conservative starting dose according to Dechra's guidelines, so that part sounds good to me.

[Squirt's Mom]

Hi Patti,

That is a low starting dose, but that may be the best approach for Jesse after what he has been through. UC-Davis recommends starting at 3mg/kg so this is closer to their recommendation than Dechra's. I wouldn't worry over much about the low dose...probably a good thing. Trilo is easy to adjust and it's better to start low and tweek up as needed than risk a crash by starting with too much.

Jesse will tell you if he needs to be on twice a day dosing. You will notice that the signs seem to start coming back in the afternoon/evenings if he does need the dose split. We usually advocate twice a day dosing as this is what the studies we have read say and what we have seen in several pups. But we have also seen pups that do well on the once a day dosing. Each pup is unique so just watch Jesse and you will notice if the med seems to be losing its effectiveness later in the day. ;)

Dr Peterson is so well respected, it would be hard for me to question his recommendations or go against them; same way I feel about Dr Oliver at UTK. :) Give his plan a little time and see how Jesse responds. The good thing about Trilo is its short life...it leaves the body much quicker than Lysodren.

You're a good mom who watches her baby like a hawk so I know you will do just fine with this plan. Of course, we are here if you need us! :D

Hugs,
Leslie and the girls

[frijole]

Heh Patti - I agree with the others that a lower dose is better to start with trilo. You monitor Jesse closely and you certainly will and you let us and the vet know if you see anything going on. When in doubt, withhold the drug. It quickly leave the system. Hang in there. Kim

[Patricia ann Wh]

Hi Lesley,
I've been meaning to ask this for a long time now.:confused:
Does anyone else notice the symptoms, water intake, panting, hunger, all are exasperated in the p.m. Why is that???

"Jesse will tell you if he needs to be on twice a day dosing. You will notice that the signs seem to start coming back in the afternoon/evenings if he does need the dose split."

Thank you all, I'll be watching

Do you think I should have prednisone on hand??

As far as split dosing, do most people do - say 7 am - 7 pm??

[frijole]

Patti - Yes you MUST have prednisone on hand. No doubt about that. If you don't have any on hand do NOT give the first dose until you do. Call the vet to get it. I would also be sure the next time you speak with Peterson's office that you let them know that your vet failed to give you prednisone and so Peterson needs to be VERY SPECIFIC when he gives instructions to your vet and not assume he knows protocol.

Re the exact time of dosing, I believe most here indicated they do it at a time convenient for them - usually after the meal so they can withold it if necessary. Kim

[labblab]

Patti,

If you are going to use a twice daily dosing schedule, then you are right that from a timing standpoint, once every twelve hours is ideal. However, trilostane should always be given with food so that it is absorbed properly. So Jesse's feeding schedule may influence your exact timing.

Also, although I'm sure you would do this anyway, you really need to discuss dosing options with Dr. Peterson before making any change to twice daily dosing on your own. As I said earlier, even though we are aware of several research studies advocating the advantages of twice daily dosing, the only two formal clinical protocols with which we are familiar still recommend starting out first with one dose a day (although we're awaiting current info from UC Davis). Once a therapeutic ACTH level is achieved on the once daily dose, then the dog is monitored for a return of symptoms later in the day. Also, a UC:CR test performed on a urine sample obtained in the morning prior to trilostane dosing can also help indicate whether the once daily dose is adequate, or whether a shift to twice daily dosing is advised.

I feel confident that Dr. Peterson is very familiar with both the current research and current clinical practice. So I would encourage you to discuss the relative merits of once vs. twice daily dosing with him directly to find out the basis for his recommendations.

Marianne

[Patricia ann Wh]

Hi Kim,

I did ask the vet and he said I DO NOT need prednisone - he was really adamant. I was too - after everything I've read from cush mom's and dad's,
I knew what I had read. I'm calling him back.

Thanks Kim;)

[Patricia ann Wh]

Hi Marianne,

So is that the reason for starting trilostane once a day??
If his symptoms are worse at night (always have been) would the dose be given - when??
If I give it at 7 am - and it wears off by the pm - oh - I'm confused.:confused::confused::confused:
He always at his worst at night anyway.
My vet (I'm not his biggest fan) is unavailable till after noon time today.
He is the one talking with Peterson, I guess I'm not in the conversations ( I was told from the get go - I would be)
No you're right I have to go along with Peterson - who am I to argue.
I guess the twice a day just makes more sense to me.
Everyone says it short acting.
One of the other vets I talked to told me he went to a lecture at Tufts recently and they also recommended twice a day dosing.
Once again - I can't argue with the world renown expert.
And yes, of course, he must be very familiar with the very latest findings and research on trilostane by ALL sources.
It WOULD be nice if I could talk to him, I know Jesse better than anyone.

Thank you very much Marianne:):):):)

[Patricia ann Wh]

Hi- One more thing here.

I know my story is complicated because of the vets involved here.

NOT ONE OF THEM HAS USED TRILOSTANE, thats why so many got involved - they are anxious to try it though, and Jesse is first in line. Guinae Pig ?????

But - Peterson has not seen my dog, and the vet that he is working with has NOT seen my dog since last AUGUST for a UTI - that was when Jesse was at his best - perfect. It really seems that Dr. Peterson should have some questions for me that can only be answered by me. I hope the once a day isn't too much at once for Jesse - he is a senior.
Here I go - questioning again.
I'm just trying to avoid Jesse having a set back and then waiting to start all over again.

Am I worried - or what.

Patti

[labblab]

It really seems that Dr. Peterson should have some questions for me that can only be answered by me.
Patti
Patti, I agree with you totally! And I thoroughly apologize if my earlier reply made you think I was being critical of your questions about all this. I don't think you should blindly follow ANYONE'S advice (world-renowned or not) if you have questions or worries about what they are telling you. What I meant was that I hope you'll really press hard to talk directly to Peterson yourself in order to have your questions answered. Since you know his number, I would keep calling back and leaving messages to the effect that since your own vet has never used trilostane before, you are not comfortable with proceeding with Jesse's treatment until you can speak to him directly, at least once.

Since so many researchers have endorsed twice daily dosing, I agree with you -- I would want to hear what he has to say about the question. I know this is so stressful, but you are doing a great job in being Jesse's advocate and in trying to set things up in the best manner possible for him.

Marianne

P.S. If you go and take a look at this link, Vetoryl Treatment and Monitoring Flowchart (http://www.dechra-us.com/File/vetoryl_Treatment_and_Monitoring_Flowchart.pdf), it should help you make sense of Dechra's recommendations. As you will see, according to their protocol you would give a once daily dose in the morning with breakfast. This is because Jesse's subsequent monitoring ACTH tests must be performed 4-6 hours after having taken the trilostane. The goal is to lower his post-ACTH result to between 1.45 and 9.1, and to keep his symptoms controlled consistently throughout the day. Once his ACTH result falls within that therapeutic range, if his symptoms are controlled initially but recur again later in the day, you will know that the trilostane is losing its effectiveness too rapidly and twice daily dosing may work better for him. In that event, the overall daily dose will be increased by a small amount and then divided in two.

[Patricia ann Wh]

Marianne -- THANK YOU

I was beginning to think I'm starting menopause and just plain going crazy.

So - if his symptoms are always worse at night already, if I give the am dose - his symptoms could be worse - because they always are anyway - or because the trilostane has lost its effectivesness. How will I know which reason is causing that?? And if 90 milligams is what he wants me to start with once a day- why not try 45 and 45 twice a day, wouldn't you then cut out the 1st step that may or may not be right to begin with.

I have been trying to talk to Peterson. I'm beyond frustrated.
Thank you 10 billion no gazillion times over Marianne

[labblab]

And if 90 milligams is what he wants me to start with once a day- why not try 45 and 45 twice a day, wouldn't you then cut out the 1st step that may or may not be right to begin with.
Marianne
That is really the million dollar question for us all right now. That is one reason why, selfishly, I am also really interested in your having the chance to talk to Peterson directly for his clarification (and why I'm hoping our other member Katharine will get some current info from UC Davis). In light of the research recommendations and "common sense," it is puzzling why Dechra has not changed their treatment protocol.

However, clinicians may just feel that it is a less complicated process to arrive at an optimal dosing schedule if you start out first with once-a-day dosing. My own dog was the first trilostane patient for my specialist nearly five years ago, and research was already coming out endorsing twice daily dosing. So even though Dechra's recommendations were to start with once a day (they were "Arnolds" at that time), I prevailed upon my vet to let us start with twice daily dosing right from the beginning. However, we ended up making a lot of dosing adjustments along the way, and in retrospect, I always wished that we had just started out with the easiest regimen first to see whether it was sufficient.

Since Jesse's symptoms always seem to be worse at night, though, I can see why you especially want to consider an evening dose. So I'll keep my fingers crossed that you will soon be able to talk to the great "OZ" himself!! :o

Marianne

P.S. And in answer to your question, I don't think there would be any "wondering" about a shift to twice daily dosing if, in fact, Jesse continues to exhibit recurrent symptoms at night after an ACTH test shows that his cortisol level has been lowered sufficiently in the morning. I think the shift would be a done deal -- it would be clear that the trilostane's effect was waning too quickly and not providing the relief he needs at night.

[frijole]

Patti my heart goes out to you... you have so many docs with so little time! I am glad you clarified that even though Peterson is "advising" your dog -he is NOT talking directly to you. This is my concern. I worry that Peterson assumes your doc understands cushings "basics". I also worry that your doc can't understand what he's told and will miss something. In other words - I fear their might be a breakdown in communication.

Your doc might be adamant against giving prednisone but I find it hard to believe a cushings specialist would be. I would call Peterson's assistant up and point blank ask. And I would get me some prednisone. ;):D:rolleyes:

Hugs
Kim

[labblab]

Patti, here is a February, 2009 video interview with Dr. David Bruyette in which he discusses trilostane dosing and monitoring (he's a well-known specialist in Los Angeles). You may find it interesting, because he discusses the relative merits of once vs. twice daily dosing, given the recent research study results.

If I am understanding him correctly, his clinic still recommends starting first with once daily dosing, because even though the recent studies indicate that twice daily dosing suppresses cortisol efficiently and at a lower overall daily dose, the majority of dogs appear just as "well" clinically on a once daily dose. As we have discussed here, he shifts to twice daily dosing only for the minority of dogs who do not demonstrate consistent symptom relief throughout the day.

One thing that is surprising to me is that he says that the overall daily dose tends to be lower with twice daily dosing. I thought it was just the reverse -- that in many cases, the overall daily dose needs to be increased a bit, at least when it is first split into two doses (and I think that is Dechra's recommendation). But perhaps what he is referring to is the effect over time. Anyway, here's the video:

http://veterinarymedicine.dvm360.com/vetmed/What-are-your-trilostane-dosing-and-monitoring-rec/ArticleStandard/Article/detail/567360

Marianne

[Patricia ann Wh]

Hi Marianne,

So.......say Jesse was getting 90 mg. a day - if he were to get 2 doses a day
....a lower end dose would be something like 40 / 40 ?? equaling a lower dose than 90?????

Yes, I had seen that before - a month ago it didn't mean much to me ... different story now.

I think he is saying that either way - once a day or twice a day dosing - both are just as effective.

I would think because Jesse symptoms are worse at night - twice a day would be better for him.

PS Have others found the symptoms are worse at night????

(By the way - Peterson wasn't advising my vet for free)

Not that I want to start badmouthing - I need to focus my attention on making Jesse feel better - that's all I want.

Once Jesse feels better I can start throwing rocks. (or dog poop):D

Thank you so much, Patti and Jesse

[labblab]

Hi Marianne,
So.......say Jesse was getting 90 mg. a day - if he were to get 2 doses a day
....a lower end dose would be something like 40 / 40 ?? equaling a lower dose than 90?????

I, too, was confused by Dr. Bruyette's statement that dogs on twice daily dosing regimens require a lower daily dose than those who are given trilostane once a day. Especially since the starting example he gave was the same daily total either way (90 mg. once a day, or 45 mg. twice a day) :confused:. So I'm thinking that perhaps what he meant is, down the road -- after their endocrine systems have stabilized on the medication -- dogs who are dosed twice a day end up needing less total daily trilostane than those dosed once a day.

If that is truly the case -- that dogs on twice daily dosing end up needing less medication, then I too am even more puzzled as to why twice daily dosing isn't the "norm" rather than the "exception." But having worked in healthcare myself, I know that it is easier for most people to remember to take their medication consistently if they only have to do it once a day (rather than more times a day). So maybe part of the theory is that "simpler is always better" if you can end up with the same symptom relief either way.

But back to your original dosing question, for a dog of Jesse's weight, 90 mg. is a low, conservative starting dose for him whatever way you look at it. I'm betting that you will end up needing to adjust his total dose upward at least a bit, regardless of which dosing regimen you go with. That will be the value of the monitoring ACTH tests -- to let you know how much his dose needs to be altered as time goes on. And remember, even if your vet really wants you to start first with the trilostane once a day, you can jointly decide to make a switch at any point that Jesse's symptoms seem to warrant it. Just make sure that you order his trilostane capsules in a dosage size that will allow you to "manipulate" it (for instance, in 45 mg. capsules if you are getting compounded trilostane which you can order in any dose you want, or 30 mg. capsules if you are ordering brand-name Vetoryl which only comes in certain dosage strengths).

Marianne

[Patricia ann Wh]

Marianne,

That is exactly what I"m thinking - exactly.:rolleyes:
And - most of all - if the theory (or is it more than a theory) could mean a dog would need less trilostane - why not do it that way --UNLESS -UNLESS - and I am in complete agreement with you (it was actually my first reaction) people could possibly forget to dose twice a day.

Interesting VERRRRY interesting.:rolleyes:

I have to go out now - but when I get back I'll tell you the latest.

Your last statement on dosing was great. It pertains to the latest story.

Patti and Jesse

[Patricia ann Wh]

Hi,

As I said earlier I don't want to get into bad mouthing (well - I do - but....)
No, I can't talk to Peterson. Period.:mad:
As for the vet dealing with Peterson - I WILL NOT deal with him either.:mad:
I don't want to waste my time getting into the story behind it, but believe me - you'd do the same thing
On to another vet. Actually 2 - working together.
They did the latest ultrasound and the acth test.
They want to start him on 15 mg - yep -15 - twice a day for a few days.
Then up it to 30 twice a day. (it was compounded yesterday)
I think their thinking is because of his age. Yes, I do want to start slow - but - I need to changes - Jesse is such a good boy - he gets up every half hour to go out and pee - hes exhausted!!!!!!!!! Poor Boy.
So.......they want me to do a split dose of 15 - 15 for a few days, then go to 30 - 30.
One of the vets has never used trilostane the other has used it once. His experience was this - he gave it to a dog every other day.:eek:
I don't know - please tell me exactly what you think about this.
Is this low low dose going to do ANYTHING at all??????????????:confused:
Even the 30 - 30 a day?????????????????:confused:
Would the 15 - 15 or even the 30 - 30 make any difference in the cortisol at all??????????
I had to start him on something - its been since APRIL 1st when I first called Peterson - and we were supposed to get started immediately:mad::mad:
Talk to me Marianne

I wish I could print this but I don't know how to get it on the screen.
I have an old cc story I kept. This guy was giving his dog 90 mg a day.
60 in the am and 30 in the pm. The pm dose was 9 hours after the first dose because it would wear off and dog was stressed before bedtime.
He said his dog was on that regime for a year and it was perfect.
I thought that was interesting.

Do you know how long it takes before a pill kicks in???
I mean how many hours???

Patti and Jesse:)

[labblab]

Patti,

The 2007 UC Davis protocol that I've been referring to suggests starting a dog on a total daily dose as low as 1 mg. per kg. (this is a lower starting dose than Dechra recommends). If Jesse weighs 88 pounds, that translates into approx. 40 kg. So the regimen that your vets are recommending to you is pretty much consistent with the Davis protocol. And by starting this low and gradually increasing the dose, Jesse may be spared any ill feelings associated with a sudden and rapid lowering of his cortisol. The possible downside is that it may take several increases to get his dose to the appropriate level, and it may be hard to feel patient along the way.

But truthfully, after all our messages back and forth, I think you're actually right at the place that you wanted to be :) :). Twice daily dosing at a low level with a plan for gradual increases. You should know within a week to ten days whether this dose is effective for him (both by watching his symptoms and by a monitoring ACTH test). If his first ACTH test shows very little drop in his cortisol level, then your vets will know that they can be more aggressive with increasing his dose. Given the experience of others here, I am guessing that he will need a higher dose. But every dog is different, and there is no way of knowing for certain what dose he will need without monitoring his symptoms and test results.

I can't remember the exact timing of the maximum effect of trilostane, but it is within the first few hours of ingestion (that's why the ACTH is scheduled for approx. 4 hours after dosing). It also wanes rapidly, and supposed has totally cleared the system within 24 hours. For that reason, dosing every other day makes little sense to me (even though we have had a very few members who report that there dogs have been dosed this way).

Is your compounded trilostane in pill or capsule form? And what is the dosage strength?

WHEW!!!!! You must feel very relieved to finally be launching into treatment. Here's hoping that you and Jesse will soon be feeling some relief! ;)

Marianne

[Patricia ann Wh]

Marianne, Hi,

Thanks again, yes, oh yes, I am relieved to have at least gotten started.:)

I'm glad you said that starting low could avoid Jesse feeling ill. That made me feel good. Thank you for that.

The vets wanted to start out really really low. They gave me 30 mgs. and told me to get it made into 15 mg. "capsules". They said to do 15 twice a day for 3 days then go to 30 twice a day and then on day 10 we would do the blood test.

I'd like your opinion on that. Is the 15 - 15 - so low it won't do anything??
Or the 30 - 30 for that matter??

I just hope it doesn't take forever for him to start drinking less and just plain feeling better.
I guess - like you said - every dog is different.

At least today I didn't sit around waiting for phone calls - that never came.
Oh, thank you for that little video - I was trying to find it the other day.

Your the best, Patti and Jesse

[labblab]

I'd like your opinion on that. Is the 15 - 15 - so low it won't do anything??
Or the 30 - 30 for that matter??

I just hope it doesn't take forever for him to start drinking less and just plain feeling better.
I guess - like you said - every dog is different.

Patti, of course I am only guessing, but I would assume that if Jesse's cortisol has barely nudged downward at the time of the first ACTH test, your vets will feel as though they can significantly increase his trilostane dose. So at worst, I think you only have another ten days to wait and see. I can easily imagine how anxious you are to see some improvement for him, so that probably seems like a long time to you. But you have waited so long to get him the help that he needs -- I am hoping that the next couple of weeks will speed by for you.

Also, I just want to tell you how much I have also gained from our "conversation" today. It has helped me to clarify my own understanding of things, and corrected some misinformation that I was carrying around with me. So I am hoping that this will turn out to be a turning point for us all three -- you, me, and Jesse...especially Jesse. :o

Marianne

[Patricia ann Wh]

Hi Marianne,:)

Yes, "cushings" seems to be an endless, interesting, conversation topic, to say the least.

One more thing, do you think that the "lower dose - twice a day" idea is because the larger, once a day dose would stay in the system longer, and the smaller dose just doesn't last quite as long.

I don't know - I just can't seem to figure out the fact that the drug is short acting on one hand (and I haven't read anything that contradicts that!)- but on the other hand one dose should be adequate to should last 24 hours and keep a (at least somewhat) constant cortisol level.
Bottom line - HOW LONG DOES THE TRILOSTANE LAST IN THE SYSTEM??
You don't need to answer - if there even is an answer, it just all seems really contradictory to me. That's me though. I've always been a "WHY" person.:confused::confused:

By the way - is that a picture of your puppy, the beautiful, beautiful, yellow lab???:p;):)

Sincerely, Patti

[lulusmom]

Hi Patti.

I see you've got Marianne on the case which is great because she knows her stuff when it comes to Trilostane. For what it's worth, I agree with everything she has told you.

I don't believe that dogs are any different than humans when it comes metabolizing a drug and measuring it's effects from one person to the next. The effects of Trilostane on dogs is much the same. Some dogs are more sensitive than others and some dogs metabolize it better, whether it be from physiological makeup or absorption due to diet.

It is known that Trilostane has a short half life and studies have shown that the drug starts to lose it's enzyme blocking ability any time after 8 hours. I am providing a link to an abstract of one study below. A pertinent excerpt from that abstract is:
At 3 to 4 hours and 8 to 9 hours after once-daily dosing, mean post-ACTH stimulation serum cortisol concentrations were 2.60 and 8.09 Pg/dL, respectively. That's pretty telling huh?

http://www.find-health-articles.com/rec_pub_18447776-evaluation-twice-daily-low-dose-trilostane-treatment-administered.htm

I'm not sure that Trilostane is effective for a full 24 hours in any dog but rather due to physioligical make up and/or diet, some dogs probably tend to see Trilostane's effects prolonged enough throughout the day so that overnight cortisol concentrations do not increase enough to exacerbate or see a return of symptoms.

Dr. Edward T. Siegel, Late Professor of Medicine and Chief, Endocrine Service at the School of Veterinary Medicine at the University of Pennsylvania wrote a book called Endocrine Diseases of the Dog. There is some really interesting reading on the basic chemistry of steroids but the one thing I found interesting is this excerpt:


The secretion of cortisol is not constant throughout the day. The circadian rhythm of cortisol and ACTH secretion fluctuates from one day to another. Maximal cortisol secretion occurs late in the day, with the peak level occurring between midnight and early morning. Both ACTH activity and cortisol secretion gradually decrease during the day, and by late evening cortisol secretion is at its minimum.

This would certainly explain why some dogs' symptoms are much worse in the wee hours of the morning. When do you notice Jesse's symptoms getting worse?

I think your vets prescribing 15mg BID for three days and 30mg BID for seven days is a very conservative approach and I personally like conservative dosing. I've never really heard of that protocol and when I saw your post I initially thought; "how totally weird" but after mulling it over a bit, I actually think it makes sense. A lot of dogs experience huge drops in cortisol in the first few days and experience cortisol withdrawal which makes them feel pretty bad. The 15mg doses are baby steps that will drop the cortisol but not enough to make Jesse feel bad. Hmmm? Not such a bad idea really.

Glynda

[Patricia ann Wh]

Hi Glynda!!!!!!!!!;)

I've been wondering where you've been?????
Marianne sure does know her stuff!!!!!!!!!!
She's fantastic.:D;)

Excellent - excellent info, that's the stuff I've been wondering about for so long.
Everyday, 4:30 the panting starts, water goes up hunger goes crazy, he doesn't fall asleep till midnight. During the day - no panting - ever, the hunger is totally normal, (at night he would take your hand off) water goes through the roof starting at the same time.
He started Thurs. 15 mg twice a day.
Last week he was drinking up to 2 1/2 gallons a day(24 hours) !!!,(that just went through the roof about 2 weeks ago.)
Yesterday he walked and socialized more than he has in weeks, and he did not drink a full gallon of water in the 24 hours.!!!!!!!! (It was almost scary)
I had said to my mom that I bet he would be really sore today, in fact I made him go in the house because I knew he was doing too much.
He had a hard time getting up this a.m. - I got really really nervous though, thinking - is it a side effect, or was he up and down and walking around so much yesterday he was sore from all the exercise??!! :eek::confused:
He slept most of the day which he usually does because he's so wound up most of the night, come 4 - 4:30 in the afternoon, he gets going.
The water intake is low again today. :)
Its 6:00 pm here, he was hungry for sure. His legs are still tired or weak and that has me concerned, is it a side effect or just from doing so much yesterday??????? Geez - !!!!!!!!:eek:
Oh and he was barking at everyone this am. (Sunday morning):eek:
That was a good sign. (Not for the neighbors) But they love him and are very concerned too.
Interesting info on the number of hours its in the system, I have to go back and reread that now.
Great info Glynda. Thank you very very much.
You guys are brilliant - you know that???:p

Patti and Jesse

[Patricia ann Wh]

Glynda - did you see this.

I wish I could print this guys story but I don't know how to get his story on this screen.
I have an old cc story I kept.
This guy was giving his dog 90 mg of trilostane a day.
60 in the am and 30 in the pm. The pm dose was 9 hours after the first dose because it would wear off and dog was stressed before bedtime.
He said his dog was on that regime for a year and it was perfect.
I thought that was interesting.

I wonder why he didn't give his dog 30 in the am and 60 in the pm ??

It sounds like he gave the first dose at - maybe - 9 am and the 2nd dose at
6 pm.

It caught my eye because it sounds like what Jesse needs.

[lulusmom]

Patti, I did see that post and I know that a few members give their dogs one mg in the am and a different in the pm. I personally prefer to achieve control of cortisol with one bottle of pills if at all possible. Just remember that there is no hard and fast rule that applies across the board. Most of us that treat or treated with Trilostane have had to tweak the doses (with vet's guidance, knowledge and/or concurrence, of course) to find that magic daily cocktail(s) for our dogs. If you're really, really lucky, the 30mg BID will be it but if you are like the vast majority of us, let the tweaking begin. :D

Glynda

[AlisonandMia]

It would certainly be preferable to be able to control the cortisol "with one bottle of pills" as Glynda puts it and very often this works really well - that is the same dose twice a day if 2 x a day dosing is necessary.

I think the rationale for using a lower dose for one of the doses (usually the second dose) is that when you give a second dose there is still some as-yet-unmetabolized Trilo in the system even if it is not enough to have much impact on the cortisol. This means that when you give the second dose you are giving it on the "tail" of the previous dose. This happens with almost all medications - for example on a packet of Ibuprofen (human anti-inflammatory med) I have here it says: "Initial dose 2 tablets, then 1 or 2 every 4 - 6 hours as necessary.." I always need another 2 (if I need to take more) whereas my daughter (who is smaller) often gets away with only needing 1 in the subsequent dose. My husband who is larger than me also gets away with just 1 - so individual differences must be a factor here too.

What suits an individual dog and its situation seems to be quite individual and even varies over time just to make things even more interesting!:p

I don't know if anyone else has mentioned this to you yet but lot of people find it handy to have some 10mg caps on hand for tweaking purposes. You'd probably want to hold off forking out for 10mg caps initially (you could well never need them) but get hold of some pretty promptly if it looks like you are getting into wonderful world of tweaking doses as they can be really useful as you try to work out whether you need say, 60 in the am and 30 in the pm or whether 40 morning and night isn't going to work better.

Good luck!

Alison

[Patricia ann Wh]

Oh Great! Let the tweaking begin.:eek::D:rolleyes:

Now see, I had no idea people ending up doing that.
That article I read was the only one I had seen where someone actually "tweaked"

Thanks Alison. That it true about the "second" dose, I hadn't thought about that.

So - you just kind of watch the signs and "tweak":eek:
When symptoms are more pronounced - you may want to add - say 10 mgs??

Its like being a MAD SCIENTIST:D

Again, today, less than 1 a gallon of water. Incredible! I 'm still holding on to my seat. Its hard to believe. He was a little more relaxed this evening too. He napped a few hours, that was unusual. His legs were a little better too.
THANK GOD:p:D:)

I had printed alot of little stories from cc forum that I saved, ex.
68 lb dog, 15 mg 2X day (see- why start really high) you never know
80 lb dog 40 2X day 78 lb dog 60 every other day.:confused:
pony 120 mg once a day - yes a pony:eek:
toy poodle 90 once a day.
little tiny dog 4 mg once a day
And all doing great for a few yrs. I might add
I've read stories where people stop dosing for whatever reason and the cushings symptoms don't come back:confused::rolleyes:

Its just crazy. But - to me - it doesn't make sense to start high, because if there IS a bad reaction you need to stop and wait 5 to 7 days, and so now not only have you made your poor dog sick :eek:, you've also wasted time.

Maybe alot of people aren't like us and can't be bothered watching and tweaking and being concerned with our babies health and happiness.:(

Anyway, thank you all again,:p:p:);)

Patti and Jesse (Border Collie #1) :p:p;)

[frijole]

Patti,

Just letting you know you are doing a great job of this and yes - trilo users "tweak" - Lysodren users "not so much tweaking".

I truly thought when I read the first paragraph of your post I was reading a post from Glynda. :D

Kim

[Patricia ann Wh]

Hi Kim and Glynda,

Glynda, I was just looking over what you sent me about the cortisol and when it rises. Like clockwork, Jesse's head pops up at 2:30 every morning.
That's when I let him out and he goes to sleep on the front porch where its cool.
But - he's awake at that hour. I could set my clock to him.

Patti and Jesse:p

[Patricia ann Wh]

Hi Again,

I'm wondering..... what are some signs to look for when there is need for "tweaking"??:confused:

I know someone said to make sure I tell my vet, I would love to but to be honest with you, (there are two partners involved here- of course- just to keep everything confusing like it has been from day one - neither has used trilostane) and I'm actually the one that told them how I wanted to dose.
( Because of the cc forum stories I printed out and put aside). One of them wanted to start with 120 once a day.:eek: (The other was on vacation) It just DID NOT make sense to start high when I read about so many big dogs on low doses. And Jesse already wasn't feeling well, why make him more sick. NO WAY.:eek: :eek:

Anyway, can someone shed a little light on when things may need - or call for "tweaking" :confused:

[Roxee's Dad]

Hi Patty,
It's just my opinion and of course you know your Jesse better than anyone else. I would suggest:
-You think about how Jesse was previous to starting the Trilo.
-Any improvements or declines since he started the Trilo
-If all is at least as good as previously starting the meds with no bad symptoms, I would wait to see how Jesse's 1st acth stim results come out. If they are a little high, the vet will probably tweak the meds a little higher.
-I would give him a chance to accept this new drug into his system and level out. Once both you and Jesse are comfortable with his dosing (meaning no ill side effects) then there are test I learned from Marianne and Glynda, I think it called a UC/CR urine test. Do it with the first pee in the morning and the vet can check the cortisol? levels and see how much the trilo is still affecting the cortisol. (this is all simply put) They can explain it much better than I.

From there you can decide with your vet on the twice a day vs once a day dosing and the possible benifits. Other than that, you have to give it a chance, watch your Jesse, the panting, and other symptoms reappearing and what time of the day he seems to get better or worse. Maybe start keeping a simple diary of the times he sleeps, is it restfull, times she eats and drinks, times she want to go outside etc... Remember that every pup is different. In the meantime watch for current signs of improvement and record them, it doesn't happen overnight as it takes some time to see the affects.

This is just my opinion and I am hoping for the best for both you and your boy Jesse. I can see you have learned so much already so keep up the good work. Patience isn't one of my attributes so I can see where we can get anxious to see results.

Once again, keep up the good work.
John (Roxee's Dad)

[lulusmom]

Hi Patti,

John has given you some really good information. We have probably done you and injustice and confused you by using the term "tweaking". A more appropriate term is simply an adjustment to dosing. Sometimes it takes a few adjustments before finding the correct dose. You are just starting treatment so forget about tweaking for now and follow established protocol.

I believe the plan was to do three days of 15mg BID and then 30mg BID for seven days. If Jesse is tolerating the dose well, I would actually give the 30mg BID for 11 days and have an acth stimulation test done on day 14. I can't remember if you had an acth stimulation test done and if not, your vet may want to do one before starting treatment so as to have a baseline to use in assessing how well the Trilostane has effectively dropped cortisol in a 14 day period. Your vet will have to make a judgement call as to adjusting the dose based on the post acth stimulation number and the status of symptoms. Just make sure that the 14 day acth stimulation test is done within 3 to 6 hours after dosing with a meal.

I'd like to blab some more but have to get to work...I'm really late already. I'll be back later to check in on you.

Glynda

[Roxee's Dad]

Hi Patti,
Just dropping in to see how it's going with your Jesse boy. Hope all is going well and your starting to seeing some improvements.
John (Roxee's Dad)

[Patricia ann Wh]

Hi,

Well, I don't have too much time - here goes.
He started Fri. May 1st 15 am 15 pm We were at 2 1/2 gallons of water
Sat 15 am 15 pm
Sun 15 am 15 pm
Mon 30 am 30 pm
Mon 3/4 gallon of water!!!!!, he slept for the first time months from 7 pm till 2:30
When he got up at 2:30 he could barely pull himself up to get on his elbows and he was so weak I had to help him up to get out onto the porch.:eek:
Tues am. 15 mg. am still really really weak in the legs.
I decided not to give him Trilostane Tues night.
Tuesday night still incredibly weak in the legs. It scared me and him :eek:
Wednesday - a little better. am stronger legs today.
Water consumption is back up it seems.
I don't know what to do.:confused::confused:
Should I go back to 15 am 15 pm??:confused:
I called the vets and left a message - not that they'll know what to do.
Its their first time with trilostane.
God help me - to help my dog.

Please - we're looking for feedback.
This is really really something else - isn't it????:(:eek::(


Patti and Jesse

[lulusmom]

Hi Patti,

If I were you, I would stick with the 15mg twice a day until and see what the acth stim test in 10 to 14 days looks like and take it from there. It could be that even though you started slow, the 30mg twice daily may have been too much or it could have dropped cortisol too quickly causing withdrawal. This is more common than you know. There is also a possibility that Jesse could have arthritis that has been masked by the high levels of cortisol. Once treatment has effectively started to reduce these levels, a lot of dogs will start feeling the aches and pains of arthritis.

We're all here for you so hang in there, kiddo.

Glynda

[frijole]

Patti,

Just chiming in to agree with Glynda and let you know that we really do see this frequently. While I know you will still worry - please know this is common and that's what the "tweaking" discussion was all about. You just "tweaked" to a lower dose because 30 was too high. Hang in there. Kim

[ventilate]

Patti;
I hope that Jesse is doing OK. IMO if the weakness continues you need to hold on the trilo, as you have done before. Back leg weakness is a sign of having to low cortisol. With your vets lack of experience with Trilostane it is resulting in your dog not getting the excellent treatment he deserves. IMO I would be looking for a internal med specialist to take care of my dog. Trying to do this on your own is not a good idea, as when things go wrong or not quite right like now you need someone who knows what to do, who has done it before. We here have personal experience with the medications and can help guide you from what we have learned ourselves, but we can not take the place of an experienced vet. It would be in your dogs best interest to have someone with experience taking care of your pet. I would ask your vet for a referal as soon as possible so you can get this straightened out as soon a possible and so your dog can continue on the road to feeling better, and you do not need the added stress of trying to figure out what to do, that is what we pay the specialists for.
Good luck
Sharon

[Patricia ann Wh]

OH MY LORD!!!!!:eek:

I feel like the MAD Scientist!!!:eek::eek:

I don't know what I would do without all of you:confused::eek::confused:

What do people do with vets that don't know any of this (Most of them)!!!
None of them that I've met!!!!!!!!!!!!

And Peterson and the (other) vet were going to start Jesse right off on 90 mg. once a day - and NO PREDNISONE!! Oh - I hate to think of it!!!:eek::eek:

My mother called the vets last night at midnight (emergency vet) to get prednisone (we thought - maybe that's what is was - too much Trilostane for Jesse.)
I explained what was going on - the vets that are working with Jesse now work at the same place. The vet on duty said NO! He doesn't need prednisone with trilostane. Do you know I have asked (lets see) 6 , yes 6 vets and they all said they would not give me prednisone." You don't need it!!!" they insist.
He was drinking from his water bowl and he just fell over - can you imagine what we were thinking at that point. :eek::eek::eek:
We were both on the floor all night with him crying our eyes out - all night!!
We had never ever seen him like that. It was awful.

He is almost back to himself at this time today 4:30 - thank GOD.

Yes, 15 / 15. I wonder if I should wait another day. Start Friday - maybe??
Or 15 just tomorrow morning. I don't know.

I do know that his water consumption (I told you) went down to about 3/4 gallon from 2 1/2.:eek::eek: Think about it.

And yes, I've learned about the arthritis from you guys and I have UP'D all of his arthritis stuff. Big time.

You don't have to take this personally - But I love you guys.

Thank you from the very bottom of my heart - Jesse's too, and my Mom too.

Patti and Jesse

[Patricia ann Wh]

Hi Sharon, Oh how I wish I could find someone.

I've been to the endocrinologist (specialist), he's the reason Jesse hasn't been treated till now - we saw him in January. He told us to NOT treat Jesse because the drugs would surely kill him, yes he said kill him.
When I asked him what would happen if I didn't treat he said "nothing" - Jesse would be just fine.
Well, that was a lie that I'll never ever get over.

This is my 6th vet - and not one of them has used trilostane. I called every vet around, believe me. (One did but he admitted he really didn't know what he was doing - dosing every other day)

Yes, I can see how trilostane could be extremely dangerous:eek::eek::eek:

Can that urine test tell "anything" at all that would be helpful till the next blood work gets done???:confused::confused:

Thanks Sharon:):p

[lulusmom]

Hi Patti,

You aren't the first member whose vet has not used Trilostane. I can think of at least three members off the top of my head that helped educate their vet. Sooo, don't panic, girlfriend. It won't hurt to hold off on the Trilostane until Friday and then only do the 15mg twice daily. It's always better to take it nice and slow. By doing so, you may end paying for a few more acth stim tests but it's worth it to make sure that Jesse doesn't go through this crap again. I think somewhere back in your thread somebody (probably Marianne) told you that UC Davis uses a very conservative dosing protocol, something like 1mg/kg. I can't remember how much Jesse weighs but I would think 15mg twice daily is more in keeping with their protocol. I personally much prefer UC Davis protocol to Dechra's, the manufacturer.

A lot of vets do not prescribe prednisone when treating with Trilostane as it's half life is pretty short. Most dogs bounce back rather quickly by just withholding the dosing. I personally kept it on hand when I was treating my two with Trilostane but never had the need for it. If they ever got sickly, I just took them off of it for a few days. My vet and IM are more familiar with Trilostane and knew that I wanted Prednisone for sleep insurance. Just keep twisting your vet's arm. Tell him that Trilostane can throw a dog into an addisonian episode just as sure as Lysodren can and that while rare, there are documented cases of total adrenal necrosis.

Glynda

[Patricia ann Wh]

Hi Glynda and friends,

I am so happy to report that Jesse is Much better today, his legs are stronger.:p
He slept really good last night - which helps anyone. (not that I would know)
I'm waiting for the vet to call me today, I'll tell him that going up to 30 - 30 was overdosing him. :eek:
I'm not expecting him to tell me much, (remember he knows nothing about trilostane) but I'm sure he'll agree with sticking with 15 - 15.
I'm wondering about just 15 once a day.:confused::confused:

I know some of you are saying to find and listen to a good vet, and I agree. But already, if I had listened to 3 of them, Jesse might just be a memory.
But he is HERE - RIGHT NOW - and I"M LOVING HIM WITH ALL I'VE GOT:D;)

Jesse is back up to 2 gallons a day - which is a bummer.

Having walking legs is a priority. I am so hopeful he gets better, thank you all for your wonderful wonderful support.

A friend of ours is waiting for the cush test report today, a beautiful husky named Sebastian. I'm hoping for best - his parents are incredibly dedicated to him - as all good parents should be. He's a lucky lucky dog and they are lucky lucky parents.

Patti and her boy Jesse :p

[lulusmom]

Hi Patti,

I think Jesse will be okay on 15mg twice daily and at this point. Without having an acth stim test done the day a dog shows symptoms of overdose, it's almost impossible to tell if the adverse reactions are due to cortisol withdrawal or if the dose is too high. Jesse's acth stim will tell the tale.

I do hope you will encourage your friends to join our community. We'd love to hear about Sebastian and help in any way we can. My ears always perk up when I hear Husky and cushing's in the same sentence. They are a nordic breed like my Pomeranians, Lulu & Jojo, and are predisposed to adrenal hormone imbalances. They should never be treated with Trilostane without first having a full adrenal panel done by the University of Tennessee, so remember to pass that on in case we don't get the pleasure of meeting your friends.

Glynda

[Patricia ann Wh]

Hi Glynda,

If the dose is too high.........then wouldn't the cortisol withdrawal be too quick??
I'm confused.:confused:
Can you explain a little more.

Without having an acth stim test done the day a dog shows symptoms of overdose, it's almost impossible to tell if the adverse reactions are due to cortisol withdrawal or if the dose is too high.

I did send your response and the site to Sebatians parents.
I know they are extremely concerned.

Thanks so much Glynda:):D;):p
Yes, Jesse was on the 15 / 15 for 4 days with no problems.
I'm sure that's when the water went way down - so something positive was going on.

[Patricia ann Wh]

Hi All,

Another question.

If trilostane is such a short acting drug, why is it recommended to wait 5 - 7 days before restarting ??:confused::confused: AGAIN

Patti and Jesse

[Squirt's Mom]

Hi Patti,

This is my understanding....even tho the active effectiveness of the Trilo stops after a few hours, it still remains in the system in a lessened or, perhaps, altered less effective form. While this lessor form remains in the system, it is not wise to add another drug that could very well kick the remainder of the Trilo into action, or interact in some other negative way. Remember, medicines are chemicals and each chemical has unique properties. These individual properties work as intended until mixed with some other chemical, and then they interact producing consequences neither chemical alone could.

Think of it like using bleach to clean. We know that it is very unwise to mix any other cleaner with bleach as they will react and can cause a gas that is quite harmful. You make sure the bleach residue has been wiped up good before using anything else. The same with Lyso and Trilo. We want to make sure the first drug (bleach) is completely out of the system (wiped up good) before putting something else (Pine Sol) in the system. Unfortunately, it takes a bit longer to wash drugs out of the system than it does to wash bleach off. ;):p

This washout period (which I would feel more comfortable at 30 days) gives you a good opportunity to learn as much as you can about Cushing's and the various tests/treatments. It is obvious that you are doing a great deal of thinking about all this stuff and doing a good job of asking questions. Questions are one of the best ways to learn! :cool:

I hope Jesse is doing ok today and that you are feeling a bit calmer about things now.

Hugs,
Leslie and the girls

[Patricia ann Wh]

Hi, Its been a few days. Here's the update:

Jesse has been on just "15" mg of trilostane for 4 days now (this is day 4).
I know - its a very small dose - Jesse is 85 lbs.
He is sleeping and resting the best he has in a long time. Sleeping normally at night now - not wide awake till the wee hours of the morning.
He is walking much better (stronger) and he is just acting more like himself.

I'm going to keep him on 15 for one more day and then go to 15 am 15 pm.
I just do not want to risk making him weak again - it took too long for him to recover. (maybe 3 - 4 days)
The vet said that sounded good. (don't forget - he's never used trilostane)
Anyway, so far so good, I like what I'm seeing.
Thanks again everybody.:):p

Patti and Jesse

[Squirt's Mom]

Hi Patti,

I saw your post on John the Grey's thread and wanted to give these links to you, too. They are more current than the one you posted on the lecture notes, tho that link has some valid info still for sure. These studies are the ones done in the US and the UK plus some other places and were apparently used to help get Trilo approved in the US. Kathy (We Hope) posted these a little while back:

http://www.fda.gov/cvm/CVM_Updates/D...ingDisease.htm

http://www.fda.gov/cvm/FOI/141-291o120508.pdf

How is Jesse doing? I hope you are seeing some improvement.

Hugs,
Leslie and the girls

[Roxee's Dad]

Hi Patti,
I hope Jesse is doing good today.


So, do you think if the 4th day of trilo and the legs get weak - stay on it??
His legs are weak already - they are definitely more weak after the trilo.
I've read stories where people say their dogs legs are weak before - but after time they do get a little better - but they didn't say if the legs got worse and they stuck with the trilo or if they did not see weakness at the beginning of the trilo. Can anyone understand what I'm talking about?? I'm not sure I'm clear.

This is just my opinion, If Jesse's legs were weak before starting meds, then became weaker after, then it might be that he is feeling aches and pains that were masked by the higher cortisol levels. If this is the case, you and your vet may want to consider a trial run of a compatable medication to treat the aches and pains and see if it makes any difference. I tried Metacam for 2 weeks on Roxee but saw no improvement. I will be speaking with our vet again Friday and ask him if I can try Tramadal just to see if it helps her at all. We are in that experimental stage, is her (Roxee) hind end weakness still because of all the muscle wasting or aches and pains or both? hmmmm.

Please let us know how Jesse is doing today. I really hope he is doing better.

John (Roxee's Dad)

[Patricia ann Wh]

Thank you John,
You could very well be right about the pain. I will take care of that tomorrow - the best I can.

I have another question.
How soon does trilostane take effect.:confused::confused:
If you restart - can it work immediately - like the next day??
When I stopped after day 5 of the first try with trilostane (when he collapsed day 5) I started back up 5 days later and immediately his limping stopped.
He did not limp again till yesterday (that was day 3 OFF of trilostane) I stopped the second time because he was getting really weak again.

One more question (for this moment)
It seems like most people rely on the testing to see how their pups are doing - what about WATCHING for effects (good or bad) they seem to change dosages when the results come back high or low, I don't feel as though I read as many stories about just "noticing" if the dosing is off.

Do vets ever change dosages because the owner "sees" ups or downs or do vets only change dosages due to test results.:confused::confused:

I called my vet to get the 15's made into 5's, he hasn't called back yet.

Thank you for asking about Jesse - he hadn't had a trilostane (15 mg) since Tuesday am. He was much much better yesterday, barking, more himself. But -- last night he started limping again, which he hadn't done at all since last Sunday -( He restarted the tilostane on Saturday - 15 mg. a day)
NO limping at all - until last night

I don't know - maybe 10 mg a day or maybe 15 every other day.

Thank you so much Leslie and your girls - yes all the info is extremely helpful.

Patti and Jesse There has to be an answer - there has to be!!!!
We won't give up!!

[labblab]

One more question (for this moment)
It seems like most people rely on the testing to see how their pups are doing - what about WATCHING for effects (good or bad) they seem to change dosages when the results come back high or low, I don't feel as though I read as many stories about just "noticing" if the dosing is off.

Do vets ever change dosages because the owner "sees" ups or downs or do vets only change dosages due to test results.:confused::confused:

Patti, the monitoring protocols for both Dechra and UC Davis state that dosing changes should be based on BOTH test results and also behavioral reports from the owners. Neither piece is adequate in isolation. Relying on test results alone makes no sense, because the goal is to see improvement in the well being of the dog. Unless symptoms are adequately resolved and the dog is feeling well, the "job" is unfinished regardless of test results. But on the other hand, test results are also critical in helping to establish whether any given symptom is likely the result of too much or too little medication. Many different causes can result in the appearance of the "same" symptom. For instance, dogs with both very high and very low cortisol may all exhibit lethargy. But a dog may also be lethargic due to a condition unrelated to Cushing's altogether. Weakness and exercise intolerance are other similar examples. So the objective test results can help identify the most likely cause of any given symptom or issue. In summary, whether or not they are explicitly saying so, I think you'll find that most people and vets here use both pieces in assessing the need for dosing changes: the dog's test results, and also the dog's appearance and behavior.

Marianne

[Roxee's Dad]

Hi Patti,
One more thought, I believe I read some months ago that one of the cc.net members cush pup was having a real problem with an additive that a compounding pharmacy was using. I think the additive was just for color. (not sure) but seems when the member asked the pharmacy not to use the additive, the adverse affects with her cushpup went away. I think she went thru alot to figure that one out.

Hope one of the other members remembers the details of that from the old cc.net.

All the best to you and Jesse.
John (Roxee's Dad)

[John II]

OMG! We have to worry about additives as well? :eek:

[nikkismom]

Hi, all, I'm the one with the additive story. The compounding pharmacy was using lactose and orange powder to mix with the mitotane, and it did make Nikki very sick, although it is probably rare for this to happen. The pharmacy told me it was impossible.I have switched to Diamondback and my vet requests" no additives" and Nikki tolerates it fine.I think cushpups have especially sensitive stomachs and digestive systems. I have been making Nikki's food because every canned dog food I gave her gave her diarrhea. They put so many supplements and unknown things in it!:eek: She has not had stomach problems since I've been cooking her food.:)

[John II]

Is there a recipe section here somewhere?
I've been dabbling with some home cooking for Angelina - but I always worry about it lacking the right ingredients :o

[nikkismom]

I think there are recipes on line, but my vet says they really only need a protein and a carb. I stay away from grains like corn and wheat and mix ground chicken, turkey or beef with brown rice. Then I add some kind of vegie like beans, squash or broccoli, but Nikki seems to eat around all the vegies that I put in. I think I'll try grinding them up instead of chopping. I also give her a teaspoon of coconut oil and fish oil in one of her two daily meals.She won't take her glucosomine anymore, so I put that in her food and sometimes she doesn't notice. Some dogs like fruit which would also be good, but Nikki hates all fruit. I do think they need some fiber, ie the fruits and vegies. I also put some ground rosemary just to make it smell better, and she likes that. If I'm pressed for time, I use Wellness 95% meat mixed with the rice etc. It doesn't have the additives that other commercial foods have. Nikki will be 15 in July, so I doubt I could give her much that would do harm.If her digestion is better, it has to be good.:D

[Patricia ann Wh]

Thank you Marianne and John for clarifying those things.
Whew!! It all makes my head spin.:eek:

The vet called me back and he wants to try 15 mgs. every other day.
From the beginning - logically - it seemed to me that dosing every 12 hours made the most "logical" sense.
At this point - I'm beginning to wonder where the logic lies.:confused::eek:

I could cry - and I do - believe me. I've always been able to "make Jesse feel better" - always, the frustration I'm feeling is - well - you probably all know the feeling. Unbearable.:(

I will try the 15 mgs. every other day and I am "sure" it will work.
I must - I must think positive at this point.
THE POWER OF POSITIVE THINKING:);)

So, I will let you all know how this progresses. - Which - will be PERFECT!!

Thank you all so much - you are all so wonderful - really - Thank You.

Patti and Jesse

[Roxee's Dad]

Hi Patti,
Just checking to see how Jesse is doing. Hope Jesse is feeling better.
John (Roxee's Dad)

[Roxee's Dad]

Hi Patti,
Just wanted to check on how Jesse is doing these days? Hope he is well.