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View Full Version : Boston-Elliott diagnosed with Cushing's, Lysodren - Elliot has passed



grapey
09-01-2013, 07:49 PM
Hi everyone,
My 9-year-old Boston terrier Elliott had an ACTH test done on Friday and I highly suspect she has Cushing's. I've wondered about that for a year or so now--it started with some shaved hair that never grew back, and she's been losing hair on her back legs and around her neck a bit. Also she drinks and pees a LOT, and she's been more lethargic and having trouble jumping. She also has a little bit of a pot belly. She's not a hugely ravenous eater--though she does beg for people food all the time, but that's normal.

She had her routine yearly bloodwork done in February, and everything looked normal, even though i specifically asked about Cushing's. I think the vet said Cushing's dogs usually have elevated liver numbers? I forget exactly what it was, but whatever it was, it was normal.

Talking to the vet on Friday, she said 80 to 90 percent of Cushing's dogs have that elevated number. So I'm really confused as to why Elliott wouldn't! Anyway, how conclusive is the ACTH test? (Hope I'm spelling that right.) I want some answers. Of course I don't want her to have this disease, but it would be a relief to get a diagnosis and get her started on treatment.

I hate seeing my baby girl slowing down, having trouble jumping, drinking all the time--she's still happy and overall doing OK, but if she can feel better I want her to. :(

Also, the vet said that a dog with Cushing's can basically have the same lifespan as any dog, barring complications like blood clots, etc. Is that true? I hope so.

I'll find out the results on Tuesday. I'm not sure what I'm hoping to hear. :(

Also, if this is relevant at all, the bloodwork in Feb. showed she had low thyroid levels. She's been on soloxine, and her thyroid blood tests look good now, but I never saw a huge difference in her behavior. I thought that maybe the excess drinking and peeing could be because she's taking too *much* thyroid medication, but the vet said probably not since she's already on a super low dose.

Harley PoMMom
09-01-2013, 10:01 PM
Hi and welcome to you and Elliott,

So sorry for the circumstances that brought you here but glad you found us.



She had her routine yearly bloodwork done in February, and everything looked normal, even though i specifically asked about Cushing's. I think the vet said Cushing's dogs usually have elevated liver numbers? I forget exactly what it was, but whatever it was, it was normal.

Talking to the vet on Friday, she said 80 to 90 percent of Cushing's dogs have that elevated number. So I'm really confused as to why Elliott wouldn't!

I'm pasting this quote that was written to another member from one of our Administrators, Glynda, and I believe it will answer your question about the ALP:



I see that Cosmo has normal liver values. While this is very uncommon in a cushdog, it is not completely rare. Canines are the only species in the world who have a steroid activated alkaline phosphatase isoenzyme but a very small percentage of dogs are missing this genetic marker. Therefore, some dogs with cushing's will have normal liver values.
Glynda



Anyway, how conclusive is the ACTH test? (Hope I'm spelling that right.) I want some answers. Of course I don't want her to have this disease, but it would be a relief to get a diagnosis and get her started on treatment.

Unfortunately there isn't one test that is 100% accurate at diagnosing Cushing's so usually multiple tests are performed to validate a Cushing's diagnosis. Generally the tests used to aid with a Cushing's diagnosis are the ACTH stimulation, LDDS, UC:CR, and an ultrasound.

I believe if an ACTH stimulation or LDDS test results are positive for Cushing's then an ultrasound would be the next test of choice.

Any non-adrenal illness can create false positive results from all the tests for Cushing's but the LDDS test is more likely to do this than the ACTH stimulation test.

It would help us a great deal if you could get copies of all tests that were done on Elliott and post any abnormalities that are listed along with the reference ranges and units of measurement, i.e.ALT 150U/L (5-50)...Thanks!



Also, the vet said that a dog with Cushing's can basically have the same lifespan as any dog, barring complications like blood clots, etc. Is that true? I hope so.

Your vet is spot on! Cushing’s is a treatable disease and with proper medical management, close monitoring and owner observation, most Cushingoid pets can live to their full life expectancy, with complete or partial resolution of clinical signs, and good quality of life!


Also, if this is relevant at all, the bloodwork in Feb. showed she had low thyroid levels. She's been on soloxine, and her thyroid blood tests look good now, but I never saw a huge difference in her behavior. I thought that maybe the excess drinking and peeing could be because she's taking too *much* thyroid medication, but the vet said probably not since she's already on a super low dose.

Have Elliott's thyroid levels been checked 4-6 hours post pill?

Please know we will help in any way we can so do not hesitate to ask all the questions you want. ;)

Love and hugs, Lori

LtlBtyRam
09-02-2013, 12:59 AM
I hope you find answers for your baby. Welcome and the folks around here are just plain pawsome. I'm new here too ;)
Angela

grapey
09-02-2013, 01:48 AM
Thank you so much. I don't have any copies of her labs but I will try to get those. Also, I'm not sure when her second thyroid blood test was done--I know it was a specific amount of time after her pill, I think.

The vet said that in some cases, a dog having Cushing's can have bloodwork that makes it look like it has thyroid issues, but in reality the thyroid is fine. I think that's what she said? Yikes. There's so much to learn.

I already have a cat who's diabetic, so this seems like a lot to deal with. :( But I remember being absolutely freaked when my cat was diagnosed, and now it's no big deal to give her insulin and check her blood. I'm hoping that if Elliott has cushing's, things will go as smoothly.

nvmybostons
09-02-2013, 10:34 PM
Welcome to this wonderful forum. :) I found these folks a few weeks ago, and they are a wealth of knowledge for sure. I also have Boston Terrier (12 1/2 years), her name is Jigsaw that has been diagnosed with Cushings, and that seems to being well and Trilostane, although we are working through a secondary issue due to her being immune system being compromised with the Cushings.

It sounds like you and your vet are a good team and working through all of this, and with the support of these good folks, you're in good shape. :)

I hope it all goes smoothly for Elliott. When you have time, add some pics, love to see all the kids!;)

Take Care,

Jen & Jigsaw

nvmybostons
09-02-2013, 10:37 PM
Welcome to this wonderful forum. :) I found these folks a few weeks ago, and they are a wealth of knowledge for sure. I also have Boston Terrier (12 1/2 years), her name is Jigsaw that has been diagnosed with Cushings, and that seems to be going well with Trilostane, although we are working through a secondary issue due to her immune system being compromised from the Cushings.

It sounds like you and your vet are a good team and working through all of this, and with the support of these good folks, you're in good shape. :)

I hope it all goes smoothly for Elliott. When you have time, add some pics, love to see all the kids!;)

Take Care,

Jen & Jigsaw

grapey
09-02-2013, 11:42 PM
Thank you so much. I'm also Jen. I think Bostons are the best! My mom got one and I loved her so much that I got my own. :)

Tomorrow I'll learn the results of the ACTH test. I have been on the verge of tears all day. Honestly I'm hoping for a diagnosis, but I'm also dreading it. I want to know what's wrong and that it can be fixed. But if she has to go on lysodren (which I think the vet favors), that drug scares me, from everything I've read. And what if I mess up the loading part?

Anyway, I'll cross that bridge when I come to it. I appreciate all of you and your support.

Jen and Elliott

frijole
09-02-2013, 11:47 PM
Jen, Don't worry - many of us have used lysodren successfully - it has been around way longer than any other drug for cushings. Key is to understand how it works and we'll help you with that... also you must have an experienced vet... we'll help make sure what you are being told re lysodren is accurate.

Also know that there is no rush to treat - it is very important to have a solid diagnosis. Usually a 2nd test such as the low dose dex suppression test or an ultrasound are done to make sure it is cushings prior to starting on the drugs.

Keep us posted! Kim

grapey
09-03-2013, 02:58 PM
OK, it's official--E does have Cushing's. After the ACTH test, her high number was 26, when it should be between 8 and 17.

I asked the doctor about doing an ultrasound to confirm, but she said she doesn't think it's necessary, esp. because E has basically every single symptom. Also, it sounds like lysodren will work on both adrenal tumors and pituitary tumors, so it's not necessary to find out exactly which kind she has.

Does that all sound right?

The vet isn't rushing me to treat at all, but I would prefer to start as soon as possible, so we're going to start lysodren on Friday.

Does this sound like a good course of action?

Jen and E

Edit: I asked the vet about using trilostane, and she was open to that, but she said she doesn't have much experience with it--on the other hand, she's had great results with lysodren. I'm honestly fine with either option, just want to do what's best for my baby girl.

Trixie
09-03-2013, 03:05 PM
Sorry you got a positive diagnosis for Cushings for your little Boston. There is lots of help on this forum and very knowledgeable people to help guide you through using Lysodren.
Sounds like your vet has good experience with Cushings and using that drug which is a good thing.
The experts here would love any test results you have --even the blood work that is normal. If you can post any/all tests numbers and their normal values you will have some expert advice available to you here.
Good luck going forward, I'm sure your pup will do just fine.

Barbara

Squirt's Mom
09-03-2013, 03:36 PM
If I were you, I would wait to start loading Sun. That way your vet will in the office Mon. just in case you needed them. If you have access 24/7 to a vet, then starting Fri is fine. We don't often see problems arise with the first day but Lysodren starts to really go to work at about 48 hours after the dose so starting Fri with the weekend coming might be a bit disconcerting if something were to happen. ;)

grapey
09-03-2013, 03:56 PM
The vet's reasoning was, she expects the first two days to be pretty calm, so those days could be over the weekend (even though they're open til 1 p.m. on Saturday). Then the more risky days, day 3 and on, would be on weekdays.

I was just realizing--we're going to be out of state for a wedding Sept. 19 to 22, and we're taking E with us. Will she be stable enough by then to travel? It's a place she likes visiting :) But I wonder if it would be a good idea to travel 400 miles from her vet. It would only be a week or so after induction ends. Maybe I should wait to start lysodren until after we get back from the trip.

Harley PoMMom
09-03-2013, 04:27 PM
I can think of two reasons for wanting to know whether it is adrenal or pituitary type of Cushing's: 1) Surgery can be a cure if there is an adrenal tumor. 2) treating an adrenal tumor with Lysodren usually requires more that the standard dose...just my two cents. ;)


Maybe I should wait to start lysodren until after we get back from the trip. If this were me, I would definitely wait to start the Lysodren until I was back from a trip.

molly muffin
09-03-2013, 09:16 PM
hmmm, okay, just me, but I'd start after the trip.

Sharlene and Molly Muffin

grapey
09-03-2013, 10:27 PM
Would the risk be over a week after induction ends?

Also, another question I thought of: Would it be worth it for me to go to a veterinary internal medicine specialist? I don't know if they'd tell me anything different. I have no doubt E has Cushing's, but maybe they'd have another perspective on treatment? I know that even if it was an adrenal tumor, I wouldn't want to risk surgery.

I have confidence in my vet, but just want to do the best for my baby girl. But if a specialist would also put her on lysodren, then probably wouldn't be worth going to them.

I can't thank you all enough.

Jen and Elliott

molly muffin
09-03-2013, 10:50 PM
You wouldn't think so, but ... every dog reacts in it's own way to any drug.

If it were me, I'd just rather be close to the vet when starting a new and powerful drug. I'm a worry wart that way. It seems like if something is going to come up with Molly it will be on a holiday or long weekend when the vet is closed. I think at least once a year we've ended up at the Vet ER on a holiday weekend for some reason or other. Now I just assume if somethings going to go wrong, it's going to be when the vets not around or I can't get to one. :)

You'll Probably have smooth sailing all the way through induction and into maintenance.

Internal med specialist can be great, if they are needed, like for ultrasounds, etc. If you are confident in the diagnosis and in your vet, then no you probably don't need to go see a specialist.

I can't remember, have you had the discussion about how many cushings pets has your vet treated, what were the out comes, does she only use lysodren and have a lot of experience with it. That sort of conversation. If your vet isn't experienced, then that could also be a factor in whether a specialist is needed or not. If the vet is experienced and had good outcomes, then no need.

You're doing great and asking all the right questions.
Sharlene and Molly Muffin

Harley PoMMom
09-04-2013, 12:11 AM
Here is a link that has very informative information regarding Lysodren: Lysodren loading Instructions and related tips. (http://www.k9cushings.com/forum/showthread.php?t=181) Please do feel free to print anything out. ;)

grapey
09-04-2013, 12:29 AM
Thank you!!

Would there be any harm in waiting three weeks to start loading?

molly muffin
09-04-2013, 12:34 AM
Thank you!!

Would there be any harm in waiting three weeks to start loading?

Not that I can think of. Cushings is a slow progressing disease, so holding off shouldn't do any harm.

Sharlene and Molly Muffin

Tina
09-04-2013, 02:06 AM
Hi Jen, and welcome to you and Elliott! I just wanted to chime in regarding your trip and starting Lysodren. I agree with some of the others about waiting to start until after you are back.

It is a powerful medication and every dog reacts differently, and the time it takes to load is variable. Being close to your vet during this time period would be important, and also it is best to have Elliott's routine as normal as possible so it will be easier to spot any changes in her behavior, or negative effects from the medication. She has to be watched closely for any signs that she is loaded, and those signs can be very subtle.

Tina and Jasper

Squirt's Mom
09-04-2013, 08:51 AM
Oh, yes, I would certainly wait til after coming back home and settling back into normal routine before starting the load (induction). Tina put it best - we want to be able to pick up on any changes once treatment starts so letting them start from a comfortable, familiar place is best. There is rarely a need to rush into starting treatment - another 3 months probably wouldn't matter that much; 3 weeks is nothing. ;)

grapey
09-04-2013, 12:53 PM
I can't remember, have you had the discussion about how many cushings pets has your vet treated, what were the out comes, does she only use lysodren and have a lot of experience with it. That sort of conversation. If your vet isn't experienced, then that could also be a factor in whether a specialist is needed or not. If the vet is experienced and had good outcomes, then no need.


I realized I didn't answer your questions! The vet is pretty young, only out of vet school about 7 years I think, but she said she's treated multiple dogs with lysodren. She said she can't remember any dogs in the practice (three vets total) who have overdosed during loading, thank God! She also said that most dogs with Cushing's live relatively normal lives, and when they do pass away, it's *not* because of Cushing's--it's because of something else, e.g. old age. And even though this vet is young, the others have 50 years combined experience. I trust all of them with my diabetic cat, so I trust them with E.

Just wanted to clarify about the trip: Loading would be *over* and the ACTH test done by the time we go on the trip. During the trip we would probably be on her second maintenance pill. Wouldn't the biggest risk be over after loading?

molly muffin
09-04-2013, 10:29 PM
Actually your vet said the same things that we tell people all the time. Dogs Can live our a normal lifespan and eventually pass from something else. I wouldn't necessarily think you'd need to talk to a specialist too, like I said, unless you are going to pursue an ultrasound.

Yes loading should be over and you'd be on maintenance. You already know though that I can be a nervous nelly. Some of the others who have used lysodren will have some thoughts I'm sure.

Sharlene and Molly Muffin

grapey
09-05-2013, 04:04 PM
I keep having more and more questions ... right now I'm wondering, what is best for Elliott, lysodren or trilostane? Which do most people use these days? Which is safer?

Harley PoMMom
09-05-2013, 04:38 PM
I think it is wonderful that you are asking questions! ;) Keep on asking them!!

Trilostane is no safer than Lysodren and vice versa. These two drugs act very differently; Trilostane inhibits with the production of cortisol, while Lysodren erodes the layer of the adrenal glands that produce cortisol.

Both drugs are strong medicines and the proper protocols have to be followed when using them because if not than serious adverse side effects can be seen.

To decide which drug to use, I believe, depends on a few things; 1) which medication is the vet most familiar with and has successfully used, 2) which medication does the pet parent find more comfortable using, 3) both medications can cause gastric upset but I think Lysodren is more prone to this so if the dog is known for tummy issues, I believe Trilostane might be a better choice.

I think more vets are starting to use Trilostane as their first choice for Cushing's, but Lysodren has definitely been around much, much longer.

Hope this helps.

Love and hugs, Lori

Boriss McCall
09-05-2013, 07:36 PM
Welcome to the group. I love the name Elliott. What a cutie..
My BT who is also 9 years old has been in treatment for a year. It all seems over whelming & complicated at first. But, hopefully you will see improvements soon.
Good luck! You found the right place to get answers & support. ;)

grapey
09-06-2013, 03:09 PM
You're all so great. Thank you so much.

I've decided that the best course of action is to start lysodren, but not til Sept. 28, when we get back from our trip. So I'll be back in a couple weeks with lots of questions about loading, I'm sure! I'm praying it goes very smoothly. Loading makes me very nervous.

Harley PoMMom
09-06-2013, 04:01 PM
We'll be ready for those questions!!:D And remember we are here to help and we will get you and Elliott through that loading phase, ok? ;):)

Have a great time on your trip!

Love and hugs, Lori

grapey
09-23-2013, 03:34 PM
Hi everyone, I'm getting ready to start induction with lysodren this weekend. I'm glad we waited til after our trip, although hanging out with my mom's Boston, who's healthy, made Elliott's Cushing's symptoms stand out even more. :(

Couple questions:

First, the vet has E taking 125 mg once a day for loading. From what I've read, a "normal" daily loading dose for her weight (13 lbs) would be 250, but the vet told me ahead of time she starts lower than most vets, and I'm OK with that. Does it make a difference that E will get the pill only once a day, not twice? I don't know if I could split 1/4 of a pill into 1/8ths! :)

Second, with E on this lower-than-normal dose, would it be OK for me to start loading on Friday instead of Saturday? Just trying to predict when the lysodren might start taking effect and how that lines up with the vet's office hours (Mon-Sat).

Thank you so much!

Squirt's Mom
09-23-2013, 03:53 PM
Unless there are compelling reasons, it is best to use the method that has been working for a long time - twice a day dosing during the load.

At 13 lbs, the daily dose would be 295.50mg/day. 13 / 2.2 = 5.91kg x 50mg/kg/day = 295.50mg per day. So at 125 mg per day, you vet is starting at half the dose which will take much, much longer to load. Grapey should get 125mg twice a day and that is still lower than the 295.50mg per day but easy to divide the pill. ;)

Having said that, we have seen some goofy directions from vets work - like one pup Dr. Peterson wants on both Lyso and Pred - took the pup nearly a year to load, very expensive for the owner with testing, but it finally did work. So the call is yours to make. If she were my baby, I would opt for the twice a day dosing, tho. ;)

grapey
09-23-2013, 04:51 PM
Hmm, maybe I'll ask the vet why she wants to give such a low dose. I do know that after six days I take Elliott in for an ACTH test. I want to be cautious but also know those tests cost 250 each, yikes!

Squirt's Mom
09-23-2013, 04:55 PM
Be aware - there is NO set time for a load. Some pups have loaded in as few as 3 days, some have taken months even on the appropriate loading dose. So do NOT wait for that 6th day if you see signs that indicate he may be loaded. Stop the med immediately and call for the ACTH...even if it's only the 3rd day. ;)

grapey
09-23-2013, 05:10 PM
Oh yes, definitely. I've been reading everything I can about spotting when she might be loaded, and I've been watching her eat for the last two weeks so I can notice any differences when she eats during the induction time. Just wanted to note that if I *don't* see any differences, I go back to the vet regardless.

grapey
09-26-2013, 12:33 PM
Lysodren loading starts tomorrow (9/27). Yesterday I cut up the pills and wrapped them in cheese. At least they'll be appetizing for her.

I'm scared, but I know I'm doing the right thing. Her symptoms have worsened the last couple weeks. She's losing more hair on her arms and has a scrape on her elbow. Also, the other day she was digging furiously at a squeaky toy and one of her toes started bleeding--around the cuticle of the nail :( I guess it's because of her thin skin. That was so heartbreaking to see.

I'm praying we see brighter days ahead.

Thank you all for your support.

Jen and Elliott :)

Boriss McCall
09-26-2013, 06:43 PM
good luck! we will all be here for you & Elliott. I hope better days will be coming your way very soon.

Trixie
09-26-2013, 07:01 PM
Good Luck with the start of treatment for Elliot. It is scary at first, I was so afraid to start vetoryl with my dog, I gave the first pill and didn't take my eyes off of her for hours but it worked out just fine.
Once you see the positive results and the decrease in symptoms you will feel so relieved and your dog will feel so much better too! :)

Barbara

molly muffin
09-26-2013, 07:11 PM
Okay we're right here with you. :)

You can do it, you're doing great already. You know what to watch for, all that good stuff. Did you print out the lysodren fact sheet to put in kitchen or somewhere? That can come in handy when you are wondering and don't want to take time to look stuff up. The nerves is always the first to go when starting a new medication with our furbabies. :)

hugs,
Sharlene and Molly Muffin

frijole
09-26-2013, 07:45 PM
Howdy. I'm a lysodren mom. Used it for 4 1/2 years so I'll be keeping an eye on your thread. It is scary at first but just pay attention (you already are) and follow instructions. When in doubt ask us and never ever give a pill if you have hesitations. The drug works for 48 hrs after the last dose so you cannot take it back - always better safe.

Give it after they've eaten and wrapped like you did (caution I wouldn't prewrap a bunch of them as it might affect the pill). Are you measuring water intake also? I marked a bowl with tape and filled it the same amount everyday and subtracted so I had a total amount consumed each day. Got the norm so I knew if there were changes.

Lastly watch the poops. I found that as she got closer to being loaded her poops got less firm - never to the point of diarrhea but just softer. You won't know unless you go watch - a pain but worth it.

Oh and don't change any foods or treat during the load. That way if he vomits you know its the drug and not a food change.

That's my 2 cents. Good luck - you will do fine. Kim

Oh - what dose are you giving and what is Elliot's weight? Thanks.

grapey
09-26-2013, 10:44 PM
Thank you so much. I didn't think to watch the poops! Good idea. I'm trying to figure out how to make sure the cats don't drink from the same water bowl--I have some ideas.

E weights 13 lbs and the vet has me starting at 125 mg once a day. The vet acknowledged she starts with a dose that's lower than usual, and that's definitely true from everything I've read here. But I'm OK with it.

Budsters Mom
09-26-2013, 11:25 PM
You will become an expert on all things poop. :D xxx

frijole
09-26-2013, 11:58 PM
OK now I'm going to give you my two cents about that starting dose. It is too low. The recommended range is 25 to 50 mgs per kg of weight which means the lowest dosage would be 150 vs 125. I've been here over 8 yrs and my dog took longer to load than any dog we've ever had on the board. Loading is stressful. It is expensive. Did I mention it is stressful?

When you start out low you are making the process longer, not necessarily more successful because most dogs require 50 mgs per kg and not 25. I hope I eat my words but I absolutely would not be going in for an acth test at that low dose after 6 days. Throw the $250 out the window. Most go between 7 and 10 days and that is dosing at the high end. The only way I would go in earlier is if you saw signs of loading.

Every time I've seen someone start this low it just drags on and on and on. OK I've done my lecturing. I suspect your vet is afraid of the drug, perhaps had a bad experience.

Re the water - I had 2 dogs but just measured and didn't care who drank it because I knew what the daily household intake was and could still spot the difference.

I'm not sure what your dog's symptoms are - typically you will see changes in the symptom that is the strongest be it drinking non stop or inhaling food. My dog was all about the food so that and the poop is what guided me.

Keep us posted! Kim

Squirt's Mom
09-27-2013, 08:00 AM
Please be prepared for a very expensive and stressful (for both of you) loading phase with a dose that low. The loading dose is fixed at 50mg/kg given twice a day. When the maintenance phase starts, the dose is 25-50mg/kg given over a weeks time.

At such a low loading dose, you will be doing an ACTH about once a week to monitor the level which at the cost I pay for them would be almost $2000 a month. Plus the added stress on Elliot of having to be stuck so many extra times and so many extra vet visits - which is hard enough on them with the correct dosing approach. ;) You will be tied to the house and to Elliot until he is loaded - which can takes months with such a low dose.

I am not saying this dose won't work - it may work; I've seen a low dose like this eventually achieve the load but it took a long time and I just wanted you to be prepared for the worst scenario - this could be very expensive, very time consuming, very stressful on you both. ;)

And then, Elliot may load right away on this dose and show us all up! :D

We are right by your side all the way regardless. Anytime you have questions we will be here.

Hugs,
Leslie and the gang

LtlBtyRam
09-27-2013, 08:13 AM
I hope all goes well with your induction. I'm a trilo gal. I hope all goes well for you and E.
Angela

grapey
09-27-2013, 12:23 PM
OK, I'll talk to the vet today about the dosage. I'll ask her specifically if she sees dogs who successfully load in six days on such a low dose.

frijole
09-27-2013, 02:19 PM
The pill is easiest to cut into quarters or halves which I am sure which is why she did this. The problem is the dose is below the lowest recommended amount. If you went with 1/2 a pill which is 250 mgs you would be in between the range at 41.6 mgs per kg of weight. At least there you have a shot at loading.

Trust me I would not recommend this if it weren't true. It is the OPPOSITE with trilostane where you want to start at the lowest possible and tweak upwards.

There is no harm at trying the lower dose - other than stress and the cost of acth testing. Hope this helps. Kim

PS Most vets only see handfuls of cases but we have seen thousands in my 8 years here. No I'm not a vet but I have seen this so very many times.

grapey
09-27-2013, 11:58 PM
Talked to the vet and she said she's used the 25 mg per kg with good success. She said she would trust an owner like me to go up to the 50 per kg, which I took as a compliment--even though it may have been a reference to my obsessiveness. :) Regardless, I'm going to continue with this dosage and test Friday. If she isn't loaded by then, we may go up to the 50 mg per kg.

These vets have been very good to my pets--including my diabetic cat. They're fine with me doing home glucose testing, which some vets aren't. They know I'm a very proactive pet owner. My husband and I feel comfortable with this decision.

I will keep you all posted. THANK YOU for walking through this with me.

Jen and Elliott

molly muffin
09-28-2013, 12:22 AM
We're right here with you. :) I am glad that your vet is experienced and has had good success in the method she is using. It might take longer to load and it might not, every dog responds at their own pace to these medicines. It does say a lot that she has used this method successfully though.

You're doing a great job and it never hurts to have thorough discussions with your vet and make sure that you are all on the same page treatment wise and everyone is comfortable with the treatment plan.

It sounds like you Are all on the same page and that your vet knows what she is expecting to see and when, so that is a good thing.

Hugs,
Sharlene and Molly Muffin

grapey
09-30-2013, 11:39 AM
Thank you so much Molly. That really means a lot to me.

Today is day four of loading, and so far Elliott is acting normal. I haven't seen a reduction in her drinking yet. She has a normal appetite and is acting fine. Thankful for no crazy reactions to the lysodren.

molly muffin
09-30-2013, 08:49 PM
That is good to hear! So glad that things are going well with Elliott. :) How are your nerves doing?

:)
hugs,
Sharlene and Molly Muffin

frijole
09-30-2013, 11:01 PM
Checking in as well. Keep up the good work. Kim

LtlBtyRam
10-01-2013, 03:00 AM
Great news. Here is to hoping everything else goes as planned!
Angela

grapey
10-01-2013, 01:09 PM
Thank you so much for your support, everyone. It means a lot to me. It's day 5 and Elliott got her pill two hours ago. So far so good. I think she peed and drank less yesterday, but this morning I don't see a difference. I found a way to measure her water separate from the cats.

Yesterday I worked four hours at home and then went into the office for four hours. I was thinking, gotta get home fast to see how E is doing. Then I got in a car wreck and ended up waiting for the police for an hour and got home almost two hours later than expected!! Thankfully Elliott was fine. I was more worried about her than my bumper.

Harley PoMMom
10-01-2013, 04:00 PM
A car wreck :eek::eek::eek: OMGoodness, that's awful, and you are ok, right? Sending loving and comforting hugs, Lori

molly muffin
10-01-2013, 09:28 PM
Oh my! Glad to hear that Elliott is doing well and hope that you are too. Hot bath though. Those aches and pains from just the muscle tension of a fender bender often show up the next day. Take care!

hugs,
Sharlene and Molly muffin

Squirt's Mom
10-02-2013, 09:06 AM
Hope you're ok this morning. And very glad the accident wasn't worse. Let us know how things are going for the both of you!

grapey
10-03-2013, 11:59 AM
Oh, I'm fine. Just hoping I don't have to wrestle with the other guy's insurance to get my car fixed. Hopefully it'll just be a new bumper and a couple other minor things. I love my Corolla; I plan to drive it til it drops. :)

Elliott is doing well, thank God! Yesterday was her sixth day of lysodren, and I'm not supposed to give anything today. Tomorrow morning she goes in for an ACTH test. I'm hopeful that it's working--I think she's drinking and peeing less, and she seems to be a little more playful and energetic. Though maybe I'm just seeing what I want to see--who knows. In any case she has a good appetite and doesn't seem to be having any bad reactions to the lysodren. I'm so, so relieved.

frijole
10-03-2013, 01:17 PM
Keep us posted on how the test goes. There will be two numbers on the test. Get them both. Normally you wait 24 to 48 hrs to get results. You will want to keep a file with copies of everything in them for future reference. Good luck, Kim

grapey
10-05-2013, 03:18 PM
It didn't work. :( The vet called today with the results of the ACTH test, and Elliott didn't induce. (I forgot to ask for the numbers.)

So now we're going up to 1/4 pill 2x a day, or 250 mg per day. I hope this works. I feel such a huge burden on my shoulders to notice the tiniest change that shows she has loaded.

I knew this was a possibility but I'm still crying anyway. Here's hoping for a better week.

Trixie
10-05-2013, 03:23 PM
Oh..sorry it didn't work out as hoped. I'm not using Lysodren so I'm of no help! The experts will advise as soon as they see your post.
I'm sure the medication will work out eventually. Try not to be too upset.
It took me months (using Vetoryl) to see my dog's symptoms decrease. In fact she actually started drinking more the week we started the medication and it was pretty disappointing, but in time things got better.
It will all work out! You're doing a great job! ;)

Barbara

molly muffin
10-05-2013, 04:49 PM
Well, it was a lower dose than is usually used for loading. Kim or Leslie or one of the others that have used it mentioned what the regular loading dose would be and it is based on the weight on the dog. So, it was a chance that it would work at a lower one. Now you know though. So hopefully the next one will take and that will be that. You are still a bit lower than what we would normally see, but i think closer than you were at the 125 a day. 295.50 is recommended for 13lbs, so 250, might still take.
I know it's a nerve wrecking process though. :( you can do it! No more accidents though! :)

hugs,
Sharlene and Molly Muffin

hugs,
Sharlene and Molly Muffin

frijole
10-05-2013, 05:45 PM
I'm sorry but as I mentioned when you shared your vet's dosing instructions - you started BELOW the minimum recommended guidelines. Lysodren has been around for a very very long time (trilostane is relatively new) and there is a reason for that minimum.

Don't fear going up to 250 mg a day - that puts you in the middle of the desired range and it will probably be enough to 'load'. Watch the eating and the drinking for changes and also watch the poops every single time he goes out. Pain but you look for it to start getting soft - not runny but not firm.

Loading is stressful without a doubt and that is why I didn't want you to start at that low amount. It just adds stress and expense. So we move on now to a good dose.

You need to get us the acth test numbers so we can see how much further you have to go. If you had an acth test done before loading post both so we can see how much progress you made at the previous dose.

Don't lose hope - you just did what you were told. It isn't your fault. My dog took many months to load and ended up at a crazy dose (high) but once we made it we never lost ground and it was very easy after that. Kim

grapey
10-05-2013, 09:50 PM
I do feel more optimistic with this dose--I think we have a real shot at loading this time.

As for the ACTH results, the vet said they were actually worse than the first ones from a month ago. :( (I didn't ask how much worse.) I definitely saw her symptoms worsen during the first few weeks after her diagnosis, so this doesn't surprise me a ton. Mainly, she was losing more hair on her legs, and getting some scabs on her elbows. I sorta wish I would have started loading earlier, but I didn't feel comfortable loading and then going on an out of state trip.

When I talk to the vet next week I'll ask her about the difference between the Sept. 1-ish test and the Oct. 4 test, and why she thinks E's Cushings got worse over the month even though E was taking that low dose of lysodren week the last. And if E doesn't load in 3 to 9 days (the vet gave me that range), maybe we'll go to a specialist in town.

Jen and Elliott

molly muffin
10-05-2013, 10:09 PM
Well, no it wouldn't have been a good idea to go through loading and a trip away, all happening around the same timing. I think that was the right call. Better to wait and then just deal with it. Hopefully this will do it and you can move on to maintaining. :)

hugs,
Sharlene and Molly Muffin

frijole
10-06-2013, 12:01 AM
That makes no sense. For cortisol to be higher after giving lysodren than before? Makes me wonder about the diagnosis. Please get us all the test numbers. We've seen mistakes before - you actually need to go and get the test results so YOU can be sure they were done correctly. The two draws should be an hour apart. Pre and Post is what you will see along with the time and the result. Thanks. Kim

grapey
10-06-2013, 12:51 AM
OK, I will get those lab results as soon as I can.

Is it safe for me to keep giving Elliott the lysodren? I've already given her two doses for today.

I really have no doubt that it's cushing's. She's been showing the symptoms for a year. Only recently have they gotten worse, though. Isn't it possible that over three weeks her cortisol increased, and the tiny lysodren does wasn't enough to bring it down any (or much at all)?

frijole
10-06-2013, 01:00 AM
If you didn't give ANY lysodren there is a chance the cortisol would increase a little bit but giving lysodren and having it go up is strange. You need to read up a bit on how the drug works. If it were doing anything at that dose there should be some improvement. It makes me wonder if the higher dose is enough. That said I'm a believer in small increases.

So giving the dose today is a good thing and keep giving it but please get those results and post them. Taking a vet or the clerk who reads you results over the phone at their word can be a mistake because errors happen. Saying "normal" "higher" and "Lower" is not good enough. You want to know exactly where your dog's cortisol is.

Here's the link to info on lysodren.

http://www.k9cushings.com/forum/showthread.php?t=193
http://www.k9cushings.com/forum/showthread.php?t=181

Squirt's Mom
10-06-2013, 10:16 AM
There is a factor that may be in play here - the fat eaten with the Lyso dose. Lysodren is much better absorbed by the body if given with a little bit of fat like peanut butter, cream cheese, etc. So be sure to give Elliot a little fatty treat along with the pill and that will help it work much better. ;)

grapey
10-06-2013, 06:56 PM
Thank you!! I bought some cream cheese this afternoon. I try not to have that stuff around the house as I'm trying to lose weight, but for Elliott it's worth it. :)

Elliott's having a good day--laying in the sun, one of her favorite things.

Jen and Elliott

grapey
10-07-2013, 02:04 PM
I thought of another question--sorry! If by chance Elliott does have an Addisonian reaction (is that the right term?), and I administer prednisone, what are the chance of her being OK after that?

I do NOT plan to let this happen, but I'm just hoping for the best and preparing for the worst, as they say. Elliott is not as ravenous as some cushing's dogs, so I worry it will be hard to see a difference in her eating if/when she's done loading. Of course I am monitoring her water intake, pee/poop, etc.

Also, for those of you with dogs on lysodren, at what point did you say, they're loaded! What were the signs for you?

Thank you so much!!

Jen and E

frijole
10-07-2013, 03:39 PM
Jen, You don't give prednisone unless you think your dog is dying and can't get to a vet. It is for emergencies only.

You are giving lysodren to lower cortisol. High cortisol is caused by a teeny tumor that is sending signals to your dog to produce more cortisol even though he doesn't need more. That is what causes the kidneys to overwork and that causes the peeing and that causes the thirst.

Lysodren slowly erodes the adrenal glands that produce the cortisol. You need enough lysodren (high enough dose) for that to occur. You didn't have that with the initial dose. With the current dose you are on if your dog was to go too low (cortisol) you would see diarrhea or vomiting. You stop giving the drug and you schedule an acth test. You don't give prednisone at that point. You call your vet.

FYI what prednisone is is an artifical cortisol. It mimics it and makes your dog feel better in a matter of hours. The problem with giving it is that it will skew the acth test results. So you don't want to give it unless you have to. It doesn't hurt your dog - it helps your dog but only when you really need it as it makes cortisol go up.

Kim

http://www.k9cushings.com/forum/showthread.php?t=181

Alot of your questions are covered in this link. Please read - it details any and all signs of loading. It can be very small changes in eating and drinking.

frijole
10-07-2013, 03:42 PM
Sorry to post again but please get us the acth tests done before and after using lysodren so we can help you understand how far you have left to go. Thanks Kim

grapey
10-08-2013, 09:33 PM
OK, I have the ACTH results on Elliott:

Aug. 30: test that confirmed diagnosis
pre 6.4 (normal 1-5)
post 26.2 (normal 8-17)

Oct. 4: test after lysodren loading for 6 days at low dose (about 20 mg per kg--125 per day for 13 lb. dog)
pre 6.3 (normal 1-5)
post 30.7 (normal 8-17)

I asked the vet why Elliott's cortisol numbers would have worsened after six days on the lysodren, and she said it was probably just the progression of the cushing's over a month combined with a too-low dosage of lysodren.

I definitely saw her symptoms worsen over the month, without a doubt--mainly in her skin (losing more hair on legs, easier to get a scrape/wound on front leg).

Today is day 4 of loading on 250 mg per day (125 mg 2x a day). So far things are going well. I'm monitoring her water and peeing and it seems to have decreased. Yesterday she drank 2 cups in 24 hours--it's supposed to be about 1.6 cups. Today she's on track to drink 2 cups again, I think. I haven't noticed a change in her eating.

Last night we went for a 20-30 min walk and she had good energy for almost all of it, so that's an encouraging sign to me.

Also, I have turned into a crazy pet owner: I have set up a webcam to watch Elliott during the day--it's focused on her crate and potty pad. (She's corralled in the kitchen with baby gates while we're at work.) My hubby probably thinks I'm nuts to use the laptop in this way, but too bad. :D Actually, he's been very supportive.

So if I see any change in E's eating, I am to call the vet immediately and schedule another ACTH, preferably the same day.

Is there anything else I should be doing? This is so much pressure. :(

THANK YOU to all of you. God bless you.

Jen and Elliott

edit: Kim, I also clarified with the vet that if I see vomiting/diarrhea, I'll call them first--not just give prednisone without talking to them. So thank you for your guidance on that.

frijole
10-08-2013, 09:43 PM
Jen you are doing fine. Pretend you never did that first week of load so you are on day 4 of loading. Most dogs take 7 to 10 days to load. Believe it or not large dogs load faster than small ones... still don't know why but it is often the case.

So I wouldn't expect to see any changes yet - but you keep looking like a hawk because no two dogs are a like. Kim

frijole
10-08-2013, 09:44 PM
PS you should get a refund on the acth test for that first week... unreal that it went up while on lysodren during loading.

molly muffin
10-08-2013, 11:58 PM
Great idea about the webcam! LOL Not sure I'd get any work done if I had it set up and I could see the monitor continuously. hahahaa

I think you're doing great too! :)

hugs,
Sharlene and Molly Muffin

Squirt's Mom
10-09-2013, 10:04 AM
I just want to make you aware of something -


Aug. 30: test that confirmed diagnosis
pre 6.4 (normal 1-5)
post 26.2 (normal 8-17)

This is the diagnostic ACTH BEFORE any treatment was started. So the normal range given here by the lab is the range that is used.

Oct. 4: test after lysodren loading for 6 days at low dose (about 20 mg per kg--125 per day for 13 lb. dog)
pre 6.3 (normal 1-5)
post 30.7 (normal 8-17)

This is a monitoring ACTH test AFTER treatment was started. The normal range given by the lab here is NOT the range used once treatment has begun. For a pup on Lysodren, the post ACTH normal range is 1-5ug/dl.

This is often a confusing point for us as well as for many vets we've seen here so I wanted to be sure you know how to read the ACTH tests with Elliott on Lyso VS before he started the Lyso. ;)

I'm glad he's doing so well on the increased dose and hope you soon see the signs he's loaded and this stress is over for the both of you. Hang in there, Mom! You're doing a great job! Pet cam Mama! :D I have several friends who have the same set ups in their offices so they can keep an eye on their babies while at work. I wouldn't get anything done for watching the camera! :p

Hugs,
Leslie and the gang

grapey
10-09-2013, 12:49 PM
You're all great. I so appreciate your support.

Day 5 of loading starts today. So far so good. She drank 2 cups of water Monday and 2.5 cups Tuesday (both 24 hours) so no reduction there. (With her weight, she should be drinking 1.6 cups per day.)

I had a good chat with the vet last night; I appreciate her taking time to answer all my questions. She said if this doesn't work she recommends doing an ultrasound to see if it's an adrenal tumor. But I'm hoping it won't come to that--praying this lysodren works!

E likes her pills--they come with half a teaspoon of cream cheese :) Lucky girl!!

I did check the webcam WAY too much yesterday--mostly she slept, but I caught her trying to sneak a few crumbs of cat food from the cats' tv tray. Just being her normal bratty self. :)


Have a good day everyone,
Jen and E

frijole
10-09-2013, 01:43 PM
Jen, I suspect your vet is not real experienced with this drug based on the low starting dose and the comment about doing an ultrasound. You are on the dose you should have started with. If this dose doesn't work you can simply increase the dose a wee bit and continue loading a few more days. (it depends on where the numbers on the next acth test end up) My dog went at this loading thing for like 4 months increasing slowly and we finally got it right.

Did you have the 8 hr low dose dex suppression test done? That might tell us if it adrenal or pituitary cushings. Kim

grapey
10-09-2013, 03:28 PM
We didn't have the LDDS test done because, as I understood it, the treatment would be the same for both types of cushing's.

I'm hoping she will show signs of loading by Saturday, and then we can have the ACTH test done Saturday. If not, we'll do it Monday.

If that doesn't work I will probably take Elliott to an internal medicine specialist here in town. I will have more confidence in their knowledge of this disease.

frijole
10-09-2013, 04:49 PM
Just so you know the drug does continue to work for 2 days from the last dose. So if you stop on Saturday and have test on Saturday the cortisol will actually be a bit lower than what comes back on the test because it will drop for a couple more days. That is why we always say when in doubt don't give a dose because you can't take the pill back.

Again though this dosage is a very safe amount so I don't want to frighten you in the least. Regarding adrenal tumors - sometimes they require higher dosing amounts. Also some vets prefer to use trilostane in treating adrenal tumors. That said - you cannot just switch drugs - you have to wait a good 45 days so obviously you'd do this as a last resort.

Kim

lulusmom
10-09-2013, 07:11 PM
Hi Jenn and a belated welcome to you and Elliott.

I've just read your entire thread and wanted to echo everything Kim and others have told you as well as make a few comments of my own. I noticed that your vet mentioned that there was no need to do an abdominal ultrasound. That might be an acceptable statement if you had chosen Vetoryl (Trilsotane) to treat but not Lysodren. Dogs with adrenal tumors are extremely resistant to the effects of Lysodren and usuallly require scarey high doses, like 100mg/kg to ultimately achieve loading. Your vet prescribed 21mg/kg which is rarely effective in loading a dog with pituitary dependent cushing's and if a dog has an adrenal tumor that dose would be a mere droop in the bucket. This is why your vet should have done an abdominal ultrasound to rule out an adrenal tumor before choosing a treatment. Also at this low dose, I wasn't surprised to see that Elliott's cortisol actually increased and I seriously doubt that it had anything to do with the progression of the disease. If your vet has been successful in loading multiple dogs on these low doses, I suspect that all of her patients had pituitary dependent cushing's and most, if not all, experienced a very protracted loading period, which usually proves to be more costly for us pet owners. Another reason for doing an abdominal ultrasound is that if Elliott has and adrenal tumor, surgery could be a permanent cure, if she were to be deemed a good candidate. If not a good candidate, most specialists agree that Vetoryl is a better choice for adrenal tumors.

Kim mentioned that your vet could be afraid of Lysodren and I second that. I listened to an audio of a lecture given by a renown veterinary endocrine specialist and he talked about a survey that was done comparing loading doses prescribed by gp vets and those prescribed by internal medicine specialists. Given our experience with both professionals, the results of that survey was not surprising to me. The majority of general practitioner vets (80%) say that start their patients on a loading dose of 25mg/kg. Conversely, 80%+ of specialists, who are highly experienced with the disease and the drug, prescribe 50mg/kg routinely to PDH dogs with no complicating factors, such as GI issues. The reason for the disparity in those numbers is simply because gp practitioners aren't comfortable with the drug because 1) it's a derivative of ddt and that usually scares most sane people who have zero knowledge of or experience with the drug and 2) they don't want to make the dog sick. There is a third "because" for most cushing's experienced vets and that is their lack of faith in a pet owner to understand the seriousness of the drug and why it is imperative that they do their job of monitoring closely. That doesn't apply to you because you seem to be an excellent advocate for Elliott and your vet agrees. I wish she had figured that out before she prescribed such a low dose.


Hmm, maybe I'll ask the vet why she wants to give such a low dose. I do know that after six days I take Elliott in for an ACTH test. I want to be cautious but also know those tests cost 250 each, yikes!

Based on the information you've provided and statements made by your vet, I would have to assume that her experience may be very limited and that she may not be aware that the cost of stim tests for small dogs can be heavily discounted with a little education. The cost of stim tests is driven by the high cost of Cortrosyn, the stimulating agent. Normallly the entire vial of Cortrosyn is injected but studies have shown that just a fraction is needed to obtain accurate results. A vet can split the vials and freeze the remaining agent for future tests. You have nothing to lose and everything to gain by talking to your vet about this. If your vet is unfamiliar with how to split and store Cortrosyn, you can print out instructions that can be found on Dr. Mark Peterson's blog. He is a renown expert who provides educational information to veterinarians as well as to pet owners. You can either provide your vet with the URL to the correct page on his blog or you can print it out and take it with you when you discuss it with her. The URL is http://endocrinevet.blogspot.com/2011/03/how-to-extend-your-supply-of-cortrosyn.html I'll keep my fingers crossed that your vet will take advantage of an opportunity to learn and more importantly, save you some big bucks.

I'll be looking forward to keeping track of Elliott's progress. She's so lucky to have such a loving and conscientious mom.

Glynda

grapey
10-11-2013, 12:42 PM
Glynda, thank you so much for taking time to read E's thread. Now that she's on 250 mg per day, I feel like we have a much better chance at loading. The vet did mention that if the lysodren didn't work she suspected an adrenal tumor. I am praying it does work!! But if not, I've decided to go to an internal medicine specialist to get an ultrasound and consult with a vet who's an expert in endocrinology.

Today is day 7 of loading and no signs of change so far. I wrestled with deciding if I should take her in for an ACTH test tomorrow (Saturday), since the vet is closed Sunday, but we've decided that unless we see signs today or tomorrow, we'll take her in for an ACTH test on Monday (that would be day 10 of loading).

I figured out how to upload photos, I think, so here's one of E and her favorite toy. It's a crappy cell phone picture. (This photo is from January I think)

http://www.k9cushings.com/forum/picture.php?albumid=751&pictureid=5584


Jen and E

frijole
10-11-2013, 12:57 PM
Adorable photo.

Do you have prednisone on hand? Just checking. You should be OK but if not it would be handy to have just in case this weekend. Again just as a precaution.

You should also have a phone number to reach your vet during the weekend in case you need him/her. Obviously we are available also ;):D Kim

grapey
10-11-2013, 01:09 PM
Yep, I have prednisone. I don't have the vet's number but we have several emergency vets in town.

frijole
10-11-2013, 02:22 PM
great:D:D:D:D:D

lulusmom
10-11-2013, 02:33 PM
Hi Jen,

I just wanted to mention that your vet should be in close contact with you during loading. She should have called you starting on the second day of loading and continued to do so for periodic updates from you. Has your vet ever called you for updates? Because Lysodren has a cumulatative effect for up to 48 hours, your vet needs to insure that you aren't seeing signs that Elliott is loaded and the only way she knows that for sure is to ask you. If you miss something and continue to dose, Elliott's cortisol could go too low, throwing him into a crisis which no dog should have to go through and hefty er expenses that an owner should never have to incur because a vet is not doing their job. Granted you are a very observant mom and your vet has faith in you but that faith needs to be tested with phone calls. I believe Lori provided you with Lysodren Loading instructions and if you read through you will find the paragraph below that states how important it is that vets keep in close contact with their clients during this period. My cushdogs have passed but loaded them many times and despite my and specialist's appreciation for my knowledge of the drug and the disease, they called me routinely. These are instructions meant for veterinarians and you will also note that it clearly states that vets should never provide owners with more than 8 days of Lysodren. This is because the average loading period is 5 to 9 days and a stim test on the 9th or 10th day of loading shows that many dogs, who never showed any signs of loading, were actually loaded. My own dog drove me nuts because he never showed any signs of loading and his first stim test after 8 days of loading showed cortisol levels to be scarey low. Following these instructions to the letter will help insure that side effects are mitigated, or hopefully, completely eliminated.


Because of the potency of Lysodren, the veterinarian is encouraged not to rely on the instructions given to an owner. Never provide the owner with more than 8 days of Lysodren, initially. This drug is highly successful in eliminating the signs of hyperadrenocorticism because of its potency coupled with close communication between owner and veterinarian. Either the veterinarian or a technician should contact the owner for a verbal report regarding the dog every day beginning with the second day of therapy. In this way, the owner is impressed with the veterinarian's concern and the need to observe the animal closely.

I'll be checking in on you and Elliott frequently to see how things are going.

Glynda

grapey
10-11-2013, 05:16 PM
Hmm, good thoughts. I had just been hoping that I would see some kind of sign. I thought that everybody saw a "sign" in their dogs when loading was almost over.

I think that I may, to be safe, give the last doses tomorrow, day 8 (even if I don't see any changes) and then go in for the ACTH test on Monday--two days after stopping the pills.

(Re. vet contact, they've been calling me every other day.)

frijole
10-11-2013, 08:17 PM
Actually Jen if you do that it's perfect as it works for 2 more days and the reading will be accurate. It really is your call. Regarding knowing when it is time - you have to go with your gut. Like I said I went thru this over a 4 month period so I feel your pain but that is why you make small increases over time should the numbers not be there. If you re-read the link about loading it talks about any sign of pausing during eating, leaving food... just little things and normally you'd notice the difference. So if you want to stop after 8 days that is oK.

What Glynda might not know is that you already went a week on a lower dose and the numbers went up. To me that would give me greater comfort in going the 10 days. But thats my opinion.

Go with your gut and keep us posted - you are doing great. Kim

molly muffin
10-11-2013, 09:24 PM
Yay, so glad that your vet has been checking in with you. Every dog is different while most probably Do show signs, you can't count on it as a given.

Oh my gosh that photo is just adorable! I love the pumpkin. She is a sweetheart for sure.

hugs,
Sharlene and Molly Muffin

grapey
10-13-2013, 11:40 AM
I've been waiting for a sign, and I think I just saw it: Elliott didn't eat all of her breakfast! She's never been totally ravenous, and it's not hard to distract her, so it's been hard for me to see a difference in her appetite. But today she left several "kernels" of her food!

No pill today!! Yesterday was day 8, so I hope 8 days of loading was enough.

I'll be watching her like a hawk today. So far she seems to be acting pretty normal. Her water intake hasn't really changed.

Tomorrow she goes in at 7:30 am for the stim test. I am praying she is induced this time!!!

Squirt's Mom
10-13-2013, 11:55 AM
I'm glad you saw the sign and are stopping the Lyso! Way to go, Mom! :) Now to repeat what Kim said - the last dose taken last night I assume will reach it's peak level in 48 hours and that is the optimal time to have the ACTH done. So if the ACTH could be pushed back to tomorrow afternoon late or Tues. morning early, that would give you a more accurate reading on how well it has worked. If you test too soon, the level is apt to keep dropping after the test and the results of the early test may lead the vet to think the load hasn't been achieved. Just something to keep in mind - if the cortisol level comes back still too high in the morning, it may continue to drop more over the day tomorrow and Tues. so I would be very hesitant to continue to load IF the level is still too high in the morning. ;)

You're doing a GREAT job, Mom! Keep up the good work!
Hugs,
Leslie and the gang

frijole
10-13-2013, 05:13 PM
Wonderful news. Yeah, cush dogs don't leave any kibbles left! We will keep an eye out for your update with the test results.

I'm sure Elliott will be just fine - you are doing a great job of taking care of him. Hang in there. Kim

BostonLover
10-14-2013, 04:49 PM
YAY!!!! Great news!!!! Hoping that you get good ACTH results!!!! I was so happy once I saw the loading sign in AnnaBelle!!!:D:D

frijole
10-15-2013, 09:26 AM
Hoping for good news today, Kim

spdd
10-15-2013, 12:21 PM
Glad things are going better with the appetite. I'll be ck'g in to see how the test went. Good luck today.

grapey
10-15-2013, 05:14 PM
Woohoo--she's loaded!!! I'm so happy and relieved!!!! Here are her ACTH results:

pre: 3.2 (normal 1-5)
post: 3.4 (normal 1-5)

When the vet called, she started out by asking how Elliott was doing, and I though, oh jeez, she's making small talk to postpone the bad news, so I straight out asked, How did she do? Then the vet told me :)

Now we start maintenance at 1/4 a pill 2x a week. We'll do another ACTH stim test in a month.

I can't THANK YOU all enough for your knowledge and support! I read so much on this site, and I was praying that I would see a clear sign to stop the lysodren, and when I saw that food left in her bowl I knew that was it!

Her appetite has lessened, but she's eating her food--just not all in one sitting. I will keep an eye on this for sure. She still begs for treats, which she's done her whole life so that's not a surprise. I'll also still measure her water intake. It's definitely decreasing!!

Squirt's Mom
10-15-2013, 05:16 PM
WOOHOO!!! Alright! Now the hard part is over and you can take a very deep breath, Mom! You and Elliot done GOOD! :cool::cool::cool:

Harley PoMMom
10-15-2013, 09:19 PM
Great job, Jen!!! ;)

frijole
10-15-2013, 09:23 PM
Happy Dance. That is the news I wanted to hear. Good job - you are a great pupil. :D

The vet might not have mentioned it but you should have a follow up acth test done 30 days out (or so) just to check if you are maintaining the load. Once you make it past that point - if you are keeping up the load you are on auto pilot unless you see symptoms returning.

If you don't do the follow up and you creep up then you have to do a mini load and you really don't want to do that do you? Yikes.

Thanks for coming back with the good news. Keep us posted on how he's doing and just hang out if you like. ;) Kim

molly muffin
10-15-2013, 09:42 PM
Fabulous news!!!

hugs,
Sharlene and Molly Muffin

BostonLover
10-16-2013, 10:13 AM
This is AWESOME news!!!!! Way to go!!!!!!!!!!!!! :D:D

grapey
10-16-2013, 12:45 PM
Thank you everyone!! Today she took her first maintenance dose.

Kim, yep, we go back in a month for another stim test.

Her appetite concerns me a little--she only ate probably 2/3 of her food this morning. But she was still more than willing to eat a few treats before I left for work!! Crazy. I'll just keep an eye on things. Her water intake is good.

frijole
10-16-2013, 03:39 PM
OK just to be SAFE... you are not supposed to commence the weekly dosing until you have waited ONE FULL WEEK from the last dose.

So you load and end on a Friday for example you have ACTH test on Monday. Results are good. So you do not start your maintenance dose until Friday.

You then take your maintenance dose and you give it every few days depending upon what your vet came up with.

Just making sure you didn't start too soon. Keep an eye out - I'm sure she is fine. Kim

Arizona Boston
10-17-2013, 07:34 PM
Hi Jen

Glad to hear your good news and thank you for posting your journey. I am considering changing from Vetoryl to Lysodren for my Boston and have been following your story closely.

So happy every thing went well for little Elliott. You did a good job!

Shelly and Lucy

grapey
10-18-2013, 04:54 PM
Hi Jen

Glad to hear your good news and thank you for posting your journey. I am considering changing from Vetoryl to Lysodren for my Boston and have been following your story closely.

So happy every thing went well for little Elliott. You did a good job!

Shelly and Lucy

Thank you so much. I read a couple past threads about how people had gone through loading with their dogs, what signs they saw, etc. It was a huge help to me. I know I'm just barely starting this journey, but already I think I see E being more playful and more confident in jumping.

I love Lucy's picture--so cute :)

Since loading, Elliott has been a little more picky about eating, so I mix about 2/3 of her normal amt of dry food with some wet cat food and she gobbles it right down. Not the best method, but she loves cat food, while one of my cats loves dog food! They're bizarre. Anyway, I'll get some wet dog food to mix with the dry Wellness.

Harley PoMMom
10-18-2013, 05:58 PM
Since loading, Elliott has been a little more picky about eating, so I mix about 2/3 of her normal amt of dry food with some wet cat food and she gobbles it right down. Not the best method, but she loves cat food, while one of my cats loves dog food! They're bizarre. Anyway, I'll get some wet dog food to mix with the dry Wellness.

Lysodren is known for gastric upset, sometimes giving Pepcid AC 20-30 minutes before the Lysodren dose can help.

molly muffin
10-24-2013, 09:14 PM
Hi Jen, how is Elliot doing? Did the tummy upset settle down? Did you use the pepcid ac that Lori mentioned?

Thought I'd check in on you :)

Sharlene and Molly Muffin

grapey
10-25-2013, 01:24 PM
Thanks for thinking of us :) Elliott seems to be doing well. I took a break from measuring her water, so I need to resume that, because I'm wondering if her drinking has decreased very much. I thought it would be more dramatic. But, even in her pre-lysodren days, she wasn't drinking a TON--some days 2 cups when she's supposed to be at 1.5 cups.

I didn't try the pepcid; I started mixing a little less dry kibble with some wet, and she gobbles that down, so we'll stick with that.

I think she's getting more confident with jumping, so that's very encouraging to see :) Also, the small scrapes on her front legs appear to have healed, so that's great!

I wish she would hurry up and regain her "muscle mass" and have her hair grow back, but from what I've read, that could take six months. Trying to be patient.

grapey
10-25-2013, 01:26 PM
Here's E keeping me company on a working-at-home day:

http://k9cushings.com/forum/picture.php?albumid=751&pictureid=5583

molly muffin
10-25-2013, 04:58 PM
Awwww that is cute. Molly is usually somewhere near my feet when I'm working from home.

Yea, the hair and the muscles are the hardest to get back. Hair has to rotate through cycles to grow again and the muscles, time, it just all takes time.
Glad to hear that Elliot is doing so good though!! That's great to hear and that the tummy upset is calmed down.

hugs,
Sharlene and Molly muffin

grapey
11-15-2013, 07:12 PM
Hi everyone,
I hope you're all doing well and your puppies too. :)

Just wanted to give an update on Elliott: Today she went back in for her one-month ACTH stim test--one month after loading successfully. I should get the results tomorrow or early next week.

E seems to be doing well--eating and drinking the same amount as before, just as playful as before. I understand her hair could take months, as could her muscle tone.

The vet tech today said she thinks E looks better now compared to a month ago--perkier and not so sickly. I hope so! It's hard for me to tell a difference because I see her every day.

E continues to drink and pee more than a typical dog her weight. She should be drinking 1.6 cups per day; she's at about 2.5 or 3 per day. That was the same amount she was drinking *after* induction (and before). So basically the drinking/peeing hasn't changed. Could a UTI be the cause of that?

We're going to put her on antibiotics for a sinus infection, and if she does have a UTI, they should clear that up too, so maybe we'll see a difference. If not, vet will do a urinalysis.

Any other idea of what could be causing the excess drinking/peeing? She had normal bloodwork in April. I don't think she's diabetic; I tested her blood at home with the glucometer I use for my diabetic cat, and her blood glucose was normal/low. (Never thought I'd be so comfortable testing my pets' blood at home ...)

Trixie
11-15-2013, 08:22 PM
Hope you get good results when the test numbers come in. My dog is on Vetoryl and her numbers are good now (after many months of tweaking) and she also drinks more than she used to before all this started.
She weighs about 16-17pounds and she's drinking an average of about 17-18oz of water a day, sometimes more or less. That is way better than the 50oz she was drinking at the height of her Cushings. :eek:
For us the drinking was the last symptom to get better..maybe Elliot will cut back on drinking now that the medication is starting to work.

Barbara

frijole
11-15-2013, 08:32 PM
I agree - the excess thirst has to be the cushings and it could still lessen once he's on the lysodren for a longer time. Or you might have to do a mini load depending on the results of the acth test. You will be fine - You could try putting some water in his food to see if this helps quench his thirst a bit as well. Hang in there and keep us posted on the results! Fingers crossed. Kim

grapey
11-19-2013, 05:01 PM
Got the results of the one-month ACTH stim test--the numbers are up.
:(

pre: 8 (normal 1-5)
post: 9 (normal 1-5)

For reference, her numbers at loading were pre 3, post 3.

The vet said she wants to up the maintenance dose to 1/4 pill three times a week. Right now E is on 1/4 pill twice a week. I think that amounts to 66 mg per kg of weight (E weighs 12.5 pounds right now).

The vet said that if a dog goes over 10 on the stim test, she usually recommends re-inducing, so E is right on the border. The vet is going to consult with an IMS here in town and get their opinion on whether or not to do another induction right now.

For now, I'm upping the dose and helping that will not only stabilize but lower Elliott's cortisol.

What do you guys think? Does this sound like a good course of action? At what point should a dog re-load?

I'm discouraged. I hoped to get some better results. :(

Squirt's Mom
11-19-2013, 05:22 PM
Ideally, an ACTH would have been done at the 2 week mark after starting maintenance and this may have been caught before it got this high. Even tho 9 isn't outrageous, I think I would prefer to do a mini-load now. It took her 8 days to load and we don't know if this is an adrenal tumor or not so I'd rather get it back down now, check it 2 weeks after maintenance is started, and go from there. Then, if she is losing control again, I think I would insist on an ultrasound to see if you are dealing with an adrenal tumor. Others may have different thoughts, but that's my 2 cents worth. ;)

lulusmom
11-19-2013, 05:43 PM
Hi Jen,

At least you now know why Elliott is still drinking and peeing too much. I have been in the exact same spot with both of my cushdogs and increasing the maintenance dose worked to bring the post stimulated cortisol down below 5 ug/dl. It doesn't always but every dog is different and none of the little buggers have read the book. I'm glad that your vet is consulting with an IMS because the IMS may just recommend that you load Elliott for a few days and then start maintenance. I've done that too and it also worked.

I know it's easier said than done but don't get discouraged. What you are going through is not uncommon. I've been there, done that and so have a lot other members.

Glynda

frijole
11-19-2013, 07:43 PM
Hello. So sorry. I think it's great the vet is consulting a specialist because if I recall you are dealing with an adrenal tumor right? Normally the dose is higher for adrenal cushings for obvious reasons. Hang in there and keep us posted what the specialist says ok? Kim

molly muffin
11-19-2013, 07:54 PM
Well fooey!

Okay so you have two options. See what the vet says after she talks to the IMS. Kim is right, we often see that it can be harder to get control of adrenal tumors. So, no getting discouraged. It will be sorted out. That little sucker is just a cortisol producing machine and we need to cog the wheels a bit.

hugs,
sharlene and molly muffin

grapey
11-19-2013, 08:12 PM
Thank you, everyone. I so appreciate you taking the time to read and respond.

Actually, I don't know what kind of tumor she has. I never had an ultrasound done. I figured that if the treatment was the same for both kinds of tumors, finding out which kind would be a moot point. And I was really encouraged when she loaded on lysodren; that told me that it most likely is a pituitary tumor.

Now I'm wondering if we should do an ultrasound. Maybe the cost of one would be comparable to the stim test?

Argh. This stinks. I had such high hopes after loading.

molly muffin
11-19-2013, 08:19 PM
Lets see what the vet comes back with.

It happens. I know it feels discouraging, but that doesn't mean that it can't be adjusted.

hugs,
Sharlene and Molly Muffin

Lola
11-19-2013, 11:23 PM
Hi Jen,

I consulted with an IMS right after my regular vet did the LDDS test and it came back positive for cushings. She wanted to start Lola on Trilo right away, I wanted to get educated first and consult with the IMS which she didn't have a problem with, she even encouraged me to do that.
I went and saw an IMS, did the ultrasound and now, for the Cushings treatment, the IMS is doing the monitoring, not the regular Vet. I though I'd rather do it this way because the IMS is located at a hospital, very hi tech, all specialties, and an ER in case something bad happens, god forbid, so all Lola's records will be in one place.
the US cost me $450 and the IMS consultation $139. it may be cheaper elsewhere I don't doubt it, I am in Orange County California, everything is 10 times more expensive out here:)
I stumbled upon a website while researching this disease, it give you IMS recommendations in your area, let me know if you'd be interested in something like that.

Good luck to you and your baby

Nadia

Lola
11-22-2013, 11:26 AM
hi there:) Just touching base with you here to see if you did the first ACTH? how did go, I hope Elliot did well.
please update us.

Nadia

grapey
11-22-2013, 02:43 PM
Thanks for checking on my baby girl Elliott :)

Right now I'm still waiting to hear from my vet, who was going to consult with the IMS, to see if we should re-load (or do a mini load).

Until I hear otherwise, I'm giving E 125 mg of lysodren three times a week. I probably won't do another ACTH stim test until mid December, or at least that's the plan right now.

molly muffin
11-28-2013, 07:56 PM
Happy Thanksgiving to you and Elliot!!

hugs,
Sharlene and Molly Muffin

grapey
12-01-2013, 11:27 PM
Thank you Sharlene! Hope you had a good Thanksgiving too.

Quick update: The day before Thanksgiving, my vet called and said she finally got ahold of the IMS. He recommended doing what we're doing now--upping the maintenance dose from 2x a week to 3x a week, and then do another stim test after a month.

So we've been doing this for about two weeks, and so far so good. I don't see a big difference in Elliott. Maybe a little less drinking/peeing, but hard to tell. I'm measuring her water again to keep track of things.

I plan to do the stim test the week before Christmas. If her numbers are still high, the IMS recommends doing a mini load. And if it comes to that, I will also ask for an LDDS test to see if Elliott might have an adrenal tumor.

But, for now, one day at a time. I got E a new toy--a super loud squeaky santa from petsmart. The louder and more annoying the toy, the more she loves it. :) Also, she loves her new rawhide bones. She carries one around in her mouth like a pacifier. Hilarious.

Harley PoMMom
12-02-2013, 04:32 PM
I plan to do the stim test the week before Christmas. If her numbers are still high, the IMS recommends doing a mini load. And if it comes to that, I will also ask for an LDDS test to see if Elliott might have an adrenal tumor.


Lysodren suppresses adrenal gland function by eroding the top layers of the adrenal gland that produce cortisol, so a LDDS test is not recommended to use for differentiating between PDH and ADH while on Lysodren. An ultrasound may be able to distinguish between PDH and ADH if both of the adrenal glands are visualized.

Hugs, Lori

grapey
12-02-2013, 05:24 PM
Lysodren suppresses adrenal gland function by eroding the top layers of the adrenal gland that produce cortisol, so a LDDS test is not recommended to use for differentiating between PDH and ADH while on Lysodren. An ultrasound may be able to distinguish between PDH and ADH if both of the adrenal glands are visualized.

Hugs, Lori

Really? Ugh. I thought doing the LDDS might be a less expensive way to tell whether it's pituitary or adrenal. I'm glad you told me. Welp, we'll do the ultrasound if we have to. I'm praying we won't have to though.

grapey
12-03-2013, 12:05 PM
I think the increased dosage may be working--Elliott's water intake is definitely down, and her pee is most definitely yellow. :) I am encouraged. Just need to make sure things don't get too low.

I'll probably schedule the stim test for next week. Good results would be the best Christmas present ever!

Hope you all are doing well and your puppies too.

molly muffin
12-03-2013, 09:21 PM
That Would be an awesome Christmas present. So glad that things are going well. :)
Who knew we'd be celebrating yellow pee. Hahahahaha

hugs,
Sharlene and Molly Muffin

grapey
12-03-2013, 09:31 PM
Just got back from an emergency trip to the vet :( I came home this evening after work to find a big swollen spot the size of a golf ball on the right side of her face, under her chin near her throat. She didn't act any different but I called the vet and got in late, thank God.

The vet thinks it's an infection in her lymph node, due to the cushing's hurting her immune system. Now we're home with antibiotics and hopefully will see improvement in two to four days. Vet said it might be an abscessed tooth or something else back there.

My worst fear is that it's a tumor, but it seems unlikely that would cause a lump to swell up in *eight hours.*

E's water drinking is still down, which I think is a good sign--hopefully it's not caused by the infection. And she's eating normally and playful as always.

I hate all this :( :(

Harley PoMMom
12-03-2013, 09:37 PM
OMGoodness, so sorry to hear this news about Grapey. Hopefully the anti's will take care of it, it doesn't seem to bother her which is a good thing...keep us updated!

Sending loving hugs, Lori

frijole
12-03-2013, 09:53 PM
I had a similar experience with my Annie... the vets would no longer clean her teeth due to her pheo tumor and what happened is she had an abscess so bad that is swelled up and day 2 it looked like a pimple and there was some blood... the bacteria actually ate thru the entire cheek from the inside out - all the way thru!!! Could not believe it. Antibiotics and some gel healed it up. Praying that is what is up with you.

Ironically they did then decide to take the risk of cleaning her teeth and she did just fine. And she was real weak by that point but she did fine under anethesia. Sending hugs - KIM

molly muffin
12-03-2013, 10:03 PM
Oh my gosh, I had just written about how good Elliot was doing too!
Nah, don't think it is a tumor, that is too fast. Infection for sure, maybe caused by tooth. Are they going to check her teeth to see if that is it?

I'm sure the antibiotics will clear it up. It's true though, cushing dogs are prone to infections of all kinds.

Glad you could get her in tonight!! Awesome job mum.

hugs,
Sharlene and Molly Muffin

grapey
12-04-2013, 12:04 AM
The vet checked her back teeth and didn't see anything immediately visible, but Elliott has basically ground her teeth almost all the way down because she's chewed on sticks so much her whole life. (Wish I would have stopped that a long time ago ...) I knew that one day I might have to get some teeth pulled.

Thank you all for encouraging me. I really need it. Elliott looks so freaky with this big lump hanging down from her neck. It just looks gross. But she doesn't seem to even notice it.

frijole
12-04-2013, 12:07 AM
Forgot to mention that Annie's showed up overnight as well. It wasn't as large as yours but it was large and freaky. They couldn't confirm it was the tooth til they put her under because it was so hard to get to. Could be the case with you as well. Keep us posted. Hugs, Kim

grapey
12-04-2013, 12:11 PM
The lump didn't get any bigger overnight, so that's good. She's only been on the antibiotics for 12 hours so I can't expect miracles yet, but I would love to see it shrink today!!

I am cautiously happy to see Elliott's drinking and peeing down for another day. I hope that's a good sign that the lysodren is working and she may be loaded again. Her appetite is also lessening, which is exactly what happened when she loaded the first time.

But should I worry about the decrease in drinking/peeing? Could it be a "bad" symptom of the infection? The vet said dogs normally drink *more* with an infection.

Also, I wanted to ask about her weight. She's gained a pound in a month! She weighs 13.7 pounds now. We've given her some wet food and she's getting half a teaspoon of cream cheese with each lysodren dose. Could that be causing this weight gain or should I be concerned?

The vet didn't seem to be concerned. I can definitely see that pound in her big belly, haha :) And I think it may be hindering her jumping onto the couch.

Please keep E in your thoughts and prayers. I worry, worry, worry. It's disturbing to see E's "frog neck" (which is what my husband jokingly calls it :)

grapey
12-04-2013, 03:37 PM
edit: I came home this afternoon and Elliott was shaking. I didn't think it was because she was cold, but I turned up the furnace and now she's better. Although I think her lump may be bigger. I'll talk to the vet over the phone this afternoon.

I just worry that she's not drinking enough. She's drank 3/4 a cup in the past 15 hours. That seems like so little. She's supposed to drink 1.5 cups in 24 hours.

frijole
12-04-2013, 04:19 PM
How long is this mini load and how far into it are you? It could be that you need to stop the lysodren. Is he drinking at all? Watch the poop to make sure it isn't getting loose (sign of loading). Just reminding you that even dogs doing a miniload can go to low so be careful and the same rules apply - if they seem loaded you stop giving lysodren because it works for 2 more days after the last dose. Kim

grapey
12-04-2013, 06:30 PM
How long is this mini load and how far into it are you? It could be that you need to stop the lysodren. Is he drinking at all? Watch the poop to make sure it isn't getting loose (sign of loading). Just reminding you that even dogs doing a miniload can go to low so be careful and the same rules apply - if they seem loaded you stop giving lysodren because it works for 2 more days after the last dose. Kim

Actually this isn't a mini load--the vet upped her dose from 2x a week to 3x. (1/4 a pill for each dose) This is her third week with this new regimen.

Her poop seems pretty normal but her drinking/peeing is decidedly down and her appetite has lessened a bit--exactly like the first time she loaded. I'm going to hold off on another lysodren til I talk to the vet. I think I would be ecstatic if not for this stupid infection :(

grapey
12-04-2013, 06:30 PM
Kim, I can't thank you enough for your help. I don't feel so alone in this when I have all of you guys.

Jen

molly muffin
12-04-2013, 07:55 PM
Pfft, you're better than me. I'd fully be expecting to see immediate changes and checking every hour to see if I could tell or not. :) yea, patience isn't my thing, especially if it has to do with my muffin.

Well, less drinking is a sign that cortisol is going down, so just watch for any other signs. Did you talk to the vet yet?

Hang in there, you're doing great. I'll expect that whopper on her neck to be gone in the morning! (too soon? Yea might take a bit longer) :) one can hope though. LOL

hugs,
Sharlene and Molly Muffin

frijole
12-04-2013, 09:34 PM
You are quite welcome. I had people here help me many years ago so I'm happy to help. Glad you are phoning the vet.. just to be safe. Kim

grapey
12-05-2013, 12:29 AM
Kim, what are your thoughts on Elliott's weight gain? A pound in a month? I thought it might be the cream cheese with the lysodren, but the vet tonight said she might have fluid in her belly.

For reference, she went from 12.3 to 13.7.

frijole
12-05-2013, 12:36 AM
I wouldn't be too concerned as cush dogs tend to be overweight and chubby. My vets scales were always inconsistent so it could be a bit of that as well... or someone wrote a number down wrong... Kim

grapey
12-05-2013, 11:01 AM
I wish it was just chubbiness--I think that number is accurate. I weighed her here at home twice and the number's even higher. And her abdomen has gotten bigger and tighter lately.

We're going to go into the vet this morning. I think the lump is a bit smaller but not by much.

grapey
12-06-2013, 12:07 PM
Yesterday was horrible. E's liver is three times its normal size. Pulmonary hypertension causing right heart problems, which is making blood back up into the liver. Now on several heart medications to see if that will help. The infection in her face is going down but the vet did aspirate and found some suspicious cells. we'll be watching the rest of the lymph nodes in her body to see if they blow up; if so, could be lymphoma. Specialist was going to send off liver cells to pathologist but thinks that for now we'll see if the heart stuff is causing the big liver. All this makes sense because she's been having difficulty breathing, but I chalked a lot of that up to being a Boston.

Is there a forum I can go to for pulmonary hypertention/heart failure stuff?

I am praying this works, and if not, we'll know what to do and when.

frijole
12-06-2013, 02:40 PM
Ah Jen I'm sorry you had such a hard day. Regardless I know Elliott has a wonderful mom that is smart enough to figure it all out. Sorry I can't help with heart issues - perhaps someone else can. Sending love Kim

molly muffin
12-06-2013, 04:28 PM
Oh crimey, that is not a great day. :(

I don't know of any forums specifically for canine heart disease. Tried to do a google search but the two I found, didn't look recent. :(

Hopefully the meds will help and the cell's will come back okay


hugs,
Sharlene and Molly Muffin

Lola
12-07-2013, 11:48 PM
Oh Jen, I am so sorry to hear that poor Elliott is having trouble.
I hope the IMS will figure out what's going on very soon!

Good luck to you and you baby

molly muffin
12-08-2013, 12:25 AM
And how is miss elliott today?

hugs,
Sharlene and Molly Muffin

doxiesrock912
12-08-2013, 02:14 AM
Oh no Jen!
Hoping that the meds help quickly and that nothing bad comes back in the tests.

Squirt's Mom
12-08-2013, 09:33 AM
RS-CHF is what Grace has, too. I have been reading up on this and have learned that we need to keep an eye out for swelling in the belly and legs which would indicate the blood is leaking out of the capillaries and pooling. Grace also has collapsing trachea which makes it hard for me to know which one is causing her coughing. If you find a good heart group, let me know and I'll do the same. ;)

grapey
12-08-2013, 02:48 PM
RS-CHF is what Grace has, too. I have been reading up on this and have learned that we need to keep an eye out for swelling in the belly and legs which would indicate the blood is leaking out of the capillaries and pooling. Grace also has collapsing trachea which makes it hard for me to know which one is causing her coughing. If you find a good heart group, let me know and I'll do the same. ;)

Is Grace on medication for this? It's a relief to find someone who's going through this too. I would love to talk to you more about this, maybe in a PM.

Elliott is doing pretty much the same; I think the fluid in her abdomen may be decreasing. It was leaking through a hernia, the IMS said, so I could feel it in a little "pocket" sorta. She seems to breath OK when she's awake, but when she sleeps, she sometimes snores really loudly and then has to wake up every so often to catch her breath, or at least that's what it looks like to me. She's also a Boston, so snoring isn't unheard of.

I'm going to call the IMS tomorrow and give them an update. I don't know how quickly all these meds are supposed to work (vetmedin, furosemide, sildenafil, and spirolactone?).

She's more fatigued than normal, but when she's awake she's playful and seems to act like herself. She's eating and drinking, though her drinking is definitely down--I hope that's because her cortisol levels are low! Though they said the lasix would make her drink and pee more, and I don't see that.

I have been crying all weekend. I hate hearing her breathing issues. I don't want to be selfish, but I think she still has a good quality of life left, if these drugs work.

I never thought I'd be facing all this. It's my worst nightmare.

I appreciate all of your support and thoughts and prayers. I feel very alone in all this.

Squirt's Mom
12-08-2013, 04:34 PM
Hi Jen,

Grace is on Vetmedin and Lasix only for now. If these aren't enough, Doc said we could add some things. I know so very little about this condition as those who have come here with heart problems so far didn't last long at all - not due to their conditions but due to lack of care/meds and they were already so very, very sick nothing much could be done other than keep them comfortable. Between the heart cough and the trachea sounds, Grace is often quite noisy but not all the time by a long shot. She coughs in her sleep at times but doesn't wheeze as much at night as she does in the daytime...but she's more active during the day, too. I try to let her move around as much as she likes because it makes sense to my simple mind that activity will help with the fluid build up around the heart and lungs. Not sure what it does for the blood leaking and pooling, tho.

When I get a chance, I'll do some asking around and looking to see if I can find us a good forum where we can talk about this with those who are living with it.

grapey
12-12-2013, 11:40 AM
Elliott's hanging in there ... I think the heart meds are working and she's more stable.

I'm keeping a close eye on her drinking and eating--she's eating and drinking like she's loaded, even though she hasn't had lysodren in eight days! She's been eating/drinking like this for a week and a half and seems to be OK. But the lasix is supposed to make her drink and pee more ... ?

Any thoughts on this?

Squirt's Mom
12-12-2013, 12:05 PM
This is the only real canine CHF discussion group I have found so far -

http://www.egroups.com/neo/groups/CanineCongestiveHeartFailure/info

I'm not sure they will accept me based on some of their rules but I have asked for clarification since I do use herbs, etc. You are not so your membership shouldn't be an issue for them. ;)

Arizona Boston
12-18-2013, 08:48 PM
Hope Elliott is better! 9 years old is still pretty young and I agree she should still have some good quality of life left if the meds can turn her around.
Lucy has a leaky heart valve which is pretty common with older small dogs. I am guessing the Cush makes it harder on those heart valves too. She also has a very large liver ( I declined an ultrasound due to the cost…I figured if it was tumor, I wasn't going to treat it and if it was due to the Cush, I hoped the Lysodren would help turn it around ).
Anyway, she is on Enalapril for her heart and the Lasix I only give when she has a loose cough.
Dogs don't really have heart attacks (due to plaque build up) the way humans do, but if one of those heart valves gives out completely, it could be fatal. ( I'm thinking about AnnaBelle, bless her heart). If the heart valve just leaks, then the meds may help.

PS I'm sorry you were crying… and hope you got it all out. You are a good dog mama and it is not selfish to want your sweet Elliot to live as long as she feels good.
Shelly

grapey
01-02-2014, 12:42 PM
I'm sorry for falling off the face of the earth ... a little update on Elliott: She seems to be responding well to the new meds. She's on four--vetmedin, sildenafil (yes, viagra!), furosemide, and spirolactone (sp?). We're also continuing to treat the cushing's with 125 mg lysodren 3x a week. She goes in for a stim test Saturday. I am optimistic about that, since her drinking/peeing has definitely decreased to a normal amount. Also, one good thing came from all the ultrasounds--she doesn't have an adrenal tumor, so since it's pitutary based, the lysodren should be sufficient.

As long as she's breathing OK, eating/drinking, acting playful, etc., we're going to keep this regimen.

molly muffin
01-02-2014, 01:31 PM
So glad to hear that you have Elliots meds straightened out and now hoping for a great stim result too.

Elliot is young, so no reason not to think that the meds will hep and she can go on to live a long life.

Happy New Year :)

hugs,
Sharlene and Molly Muffin

frijole
01-02-2014, 03:34 PM
Awesome! I went for four years with my girl without making any changes and it was a breeze... just always watch out for changes in eating/drinking/vomit/diarrhea as sometimes you have to tweek up or down... and keep having periodic acth tests... and of course come back here to check in with great news! :) Kim

grapey
01-07-2014, 10:15 PM
Stim test results back: 3.9 pre, 11 post. That's compared to 8 pre, 9 post about a month ago, before we upped the lysodren maintenance dose to 3x a week instead of 2.

Her peeing/drinking is still down, so honestly, I'm satisfied with these results.

lulusmom
01-07-2014, 11:02 PM
Hi Jen,

Unfortunately Lysodren doesn't work like Vetoryl and a post stim of 11 ug/dl is not acceptable, even in the absence of symptoms. You need the post stimulated cortisol to be below 5 ug/dl. It's evident that the increase in maintenance dose did not achieve the results your vet wanted and Elliott's adrenal tissue is continuing to regenerate. As the tissue regenerates, cortisol will continue to rise and he will become symptomatic again. At that point you will be looking at reloading. The stim test shows that the current maintenance is not effective and lysodren is not inexpensive so if it were me, I'd save my pills for a load. I know only too well, having walked in your shoes with two cushdogs, that this is as frustrating as life can get but most of us Lysodren moms and dads persevered and by golly, we got our dogs stabilized....and oh what a relief it is. Hey, isn't that an Alka Seltzer jingle? :o

Glynda

grapey
01-10-2014, 11:26 AM
Yep, the fun never ends :)

IMS recommended we do a "mini load"--1/4 tab for four days straight, then back to 1/4 tab 3x a week. Hoping it's uneventful!

Hope you all are doing well.

grapey
01-10-2014, 01:39 PM
Thought of a question: Elliott seems to be having more trouble jumping/running. I understand it could be arthritis revealing itself. Is there a supplement I could use?

Harley PoMMom
01-10-2014, 05:00 PM
Thought of a question: Elliott seems to be having more trouble jumping/running. I understand it could be arthritis revealing itself. Is there a supplement I could use?

Glucosamine and chondroitin, fish oil such as wild salmon or krill, duralactin, L-glutamine, are some supplements that may help with arthritis.

Hugs, Lori

Lola
01-11-2014, 12:31 PM
I give Lola Adequan injections, they do wonders for her ACL rupture still healing.

Nadia

grapey
01-11-2014, 06:06 PM
I'll ask my vet about that. I bought a bottle of Cosequin today but realized I should probably check with the vet to make sure it doesn't interact with her heart meds.

grapey
01-13-2014, 06:12 PM
Can I ask another question? If a dog's Cushing's is treated successfully, will his/her liver shrink down to a normal size?

molly muffin
01-13-2014, 08:26 PM
I would say that we do quite often see the liver shrink back to a more normal size, but it's not an absolute. There have been a few where I think they never went down, but in general I think they do.

I wonder if that depends on whether or not there are other things going on with the liver, other than just cushings.

hugs,
Sharlene and Molly Muffin

lulusmom
01-13-2014, 08:57 PM
Hi Jen,

Here is a statement made by Dr. David Twedt, whose lectures and papers on canine liver disease are well published:


A careful physical examination may also provide clues to the diagnosis. The most common cause of abnormal liver enzymes is not primary liver disease but rather reactive hepatic changes occurring secondary to other non-hepatic diseases. These would include such conditions as intra-abdominal disorders (IBD, nutritional abnormalities), cardiovascular disease or metabolic derangements as just a few examples. Generally these secondary changes are reversible once the primarily disease is treated.

doxiesrock912
01-13-2014, 11:29 PM
Daisy's Cushings is not quite regulated, but the IMS did mention that her liver has shrunk some. I'm taking this as a good sign.

grapey
01-14-2014, 11:33 AM
Daisy's Cushings is not quite regulated, but the IMS did mention that her liver has shrunk some. I'm taking this as a good sign.

That's great! And thank you everyone. That's good to hear. Although I know some of Elliott's liver enlargement issues also stem from her heart disease causing blood to back up into the liver. She sure would breathe a lot easier if that liver would shrink :(

In other news, I started her on Cosequin. I'm hoping that helps her to move around more easily.

I feel like I could fill a book with all the health stuff going on in our house during the past year. I had gastric bypass in July, and that was a huge undertaking, but super duper simple compared to my baby girl's issues!!

Hope you all have a good day.

grapey
01-15-2014, 06:41 PM
We put Elliott to sleep today. She had developed more fluid in her abdomen and possibly on her lungs, three weeks after an increase in diuretics. She was having a lot of trouble breathing and we couldn't let her suffer. We knew that even if we increased the heart meds they would probably only need to be raised again and again. She just wasn't feeling good or comfortable and I couldn't let her live like that. She passed away peacefully on my lap.

I am heartbroken. I already miss her so much. Everything around me here at home reminds me of her. But I'm glad she's at peace and not struggling to breathe anymore. She brought me so much joy and laughter. She was only 9 and she went too soon.

Mods, can you edit the title of this thread to reflect Elliott's passing?

Thank you everyone for all your support and knowledge and love. It wasn't the cushing's that did her in; it was the heart disease.

molly muffin
01-15-2014, 07:27 PM
My heart just broke. :(

I've edited the title for you.

I'm so, so sorry Jen. :( Elliott just had a very hard path with the heart problems. You gave her the gift of your love though, and took the pain into your own heart. She now is free and I hope playing with the other furbabies at the rainbow bridge.

Sending you lots of love and hugs, we are always here for you Jen
Sharlene and molly muffin

Bo's Mom
01-15-2014, 09:07 PM
I am so sorry to hear about Elliott. Please know that we are all here to share your pain and grief. Your little Angel is now among the others who have crossed the Bridge before and they are undoubtedly showing all the neatest places to hang out and watch over us. RIP Sweet Elliott.

Lola
01-15-2014, 10:22 PM
I am so sorry Jen, my heart skipped a beat when I read that title! RIP sweet Elliott!

Nadia

doxiesrock912
01-15-2014, 10:58 PM
Oh no Jen,
I'm so sorry about Elliott. My condolences to all of you.

drmvz
01-16-2014, 12:23 AM
Just read through. have not posted in a few years...
Sounds like Elliot was very, very lucky to have you. So sorry.

Roxee's Dad
01-16-2014, 12:48 AM
I am so very sorry for your loss. Rest in Peace sweet Elliot..... tonight you are our newest and brightest star in the sky.....

Altira
01-16-2014, 08:18 AM
Nine years old THATS not fair. I'm so sorry. If they weren't so wonderful it wouldn't hurt so damn much. Mine will be 14 in two months. We have have been skimming this road for a long time. I'm so very sorry.

frijole
01-16-2014, 08:32 AM
Oh I am so very sorry. RIP Elliott and run free of all pain. You will be missed very much. Kim

Squirt's Mom
01-16-2014, 09:48 AM
Dear Jen,

I was shocked to read this post. It had seemed Elliot was getting better then BAM, that sad, sad post. :( I am just so sorry. You and she have worked so very hard to improve the quality of her life. I can imagine the emptiness you feel this morning.

Elliot was where she most wanted to be as she flew from this old Earth - in her mom's loving arms. And I know she flew away on the wings of your love which she will always carry with her. One day you will hold her again, covering her face with all the kisses you have stored up over the years. Til that day, she will be by your side, watching over you with the same love and devotion you gave to her.

Please know we are here any time you wish to talk. You are not alone now either.

Our deepest sympathies,
Leslie, Squirt, Trinket, Brick, Sophie, Grace and all our Angels


A Special Gift

They're a very special gift, to be cherished and loved;
You're chosen for each other by God Himself above.
It's a match made in heaven so it can't be wrong;
You're tied together by a bond that's oh so strong.

All they'll ever ask from you is to be loved and fed,
And at night make sure they have fresh water and a bed.
In return, for so little, the rewards are so great!
You'll get a companion for life with some very special traits.

When you are lost and the end seems so far away
They'll walk by your side, they'll help you find your way.
When life gets you down they can put a smile on your face
As they run you in circles with their fast pace.

You'll share the good with the bad, you'll be happy and sad;
And through it all you have a friend, the best you ever had.
You're time together will be special and unique;
It will be as priceless to you as a rare antique.

Then, before you know it, the day will arrive
When suddenly your life takes a steep dive.
The furry friend who's been with you for all of these years
Has now passed on and left you in tears.

As you sit and wonder what did I do?
Why is this all happening to you?
Into each of our lives a little rain must fall,
And you must be strong to answer the call.

Your little one's spirit has flown home on the wings of a dove,
To a special place that awaits them in heaven above.
St. Francis will meet them; when they get home
He will take them to a meadow where they're free to roam.

There in the meadows, down by the pond,
Your furry friend will remember his loving bond.
He'll look into the water, then you appear;
He can see you're frightened, he can feel your fear
Through the bond that still ties you from heaven above
He looks down upon you, he sends you his love.
Because you loved him and because you care
Whenever you need him, he'll always be there.

There, in the meadows, they patiently wait for the day
When you will celebrate your life together, each and every day.
Waiting for that day; when you come walking back home
When together for an eternity through the meadows you'll roam.
Author Unknown

Jenny & Judi in MN
01-16-2014, 10:09 AM
I am so sorry. Judi

BostonLover
01-16-2014, 10:14 AM
Oh Jen-I'm SO sorry to hear this news. I'm crying as I type this. Sending you lots of love and positive vibes this morning. :( :( :(

goldengirl88
01-16-2014, 11:49 AM
I am so sorry that your dear Elliott had passed. He is running free of pain now with all the others that have crossed. God Bless you and God Bless sweet Elliott.
Patti

Arizona Boston
01-16-2014, 01:53 PM
Sweet baby Elliot. I am so sorry for your loss. You took such good care of her and when the time came to make that most difficult decision, you did the right thing. She was smart to pick you for her Mama. Now take the time necessary for yourself to grieve.
Shelly

Boriss McCall
01-16-2014, 02:30 PM
I am so sorry to read of Elliott's passing. :( big hugs to you.

grapey
01-16-2014, 04:00 PM
Oh, reading your posts, I am crying. Thank you so much. Words are not adequate to express how much your words mean to me. The house is so quiet and empty without her. My husband took all the squeaky toys off the floor because he said it would break his heart to accidentally step on one and not see her come running :( I'm leaving her crate as is and the baby gates leaning against the wall. In a way it doesn't seem real.

Trish
01-17-2014, 05:57 PM
Hi Jen

I am so sorry to read of Elliot's passing, such a sad time for you and your hubby. Please accept my condolences, if only all the pups in the world were as loved as your sweet Elliot then this world would be a better place. Big hugs x

grapey
01-27-2014, 12:30 PM
Hey everybody, just thought I would say hi via Elliott's thread :) I hope you all are having a good Monday.

It's been almost two weeks since we put E to sleep, and I'm doing mostly OK. I've learned that the weirdest things will remind me of her, and then I'll cry and cry. I miss her so much. But it also gives me a lot of peace to know that she's at peace. It seems like almost every aspect of my life is connected to her in some way, in things I said to her or mannerisms she would do, etc.

The cats have comforted us a lot. I decided to buy them a really nice cat tree so they can look outside.

ONe thing Elliott taught me, in her last few weeks, was to live in the moment--to just enjoy a day at a time, or even a moment at a time. When E had a good evening, it was like the world was perfect again.

Now that I'm not taking care of her and all that entailed, I feel like I have way too much time on my hands. I don't know what to do with myself.

Anyway, God bless all of you, and God bless all of your wonderful babies.

Arizona Boston
01-27-2014, 12:39 PM
I am glad to see you online today you are beginning to heal.

I try to imagine life without a Cush dog and it makes me realize how much time I spend and I do think that would be a very large and sudden time void. I think it is the same for any caregiver, once your loved one is gone your hands feel empty.

I have a gift catalog that has a sliver photo frame with a dog paw print on it and a caption that reads "Thanks! I had a really great time". I think that sums it up.

PS I always think of you as Grapey ...

grapey
01-27-2014, 03:27 PM
The last six weeks of her life, she was on five medications, plus we did a mini-load of lysodren the last week, plus we had to monitor her belly to see if more fluid poked through her hernias ... the only way she could sleep soundly was for me to prop up her body and prop up her head with my arm or hand. I knew I couldn't do that forever, but I hated seeing her struggle to breathe. Now I know she isn't struggling anymore. That was one of the images I will remember after she passed in my lap--how peaceful she looked because she wasn't breathing so hard.

"Grapey" is a take-off of a nickname for my cat--her name is Gracie, but I call her Grapey sometimes to annoy her, haha

I just looked through Lucy's photos. She has been so many places!! I'm a little jealous of her travels :) She's such a good looking girl.

molly muffin
01-27-2014, 06:19 PM
Jen, so glad that you are doing better. It is an empty place in our hearts that a cush dog leaves. A pretty big place. A place filled with sorrow and memories and grief, but eventually you Will add smiles and memories to that place.

It really does take so much of our time, that it is hard to think about what to do now that you aren't worrying constantly about her. It's good you have the cats. They can be quite the entertainers. :)

hugs,
Sharlene and Molly Muffin

grapey
04-06-2014, 08:43 PM
The last few days have been really hard, so I thought I'd post in Elliott's thread. Overall I thought I'd been doing OK, esp. the last couple of weeks. But lately I just miss her so much. I wish she were here.

molly muffin
04-06-2014, 09:22 PM
Jen sweetie. Don't try to rush this. Some days are going to be harder than others and it's like a wave of emotion that comes sweeping in and overwhelms you sometimes. Don't think of it as I'm doing better, or not doing as good. Today is just what it is and it is okay to say, today I miss Elliott something awful.

Hang in there!
love and hugs
Sharlene and molly muffin

Renee
04-06-2014, 09:50 PM
Sending positive thoughts. Grief is a winding road, isn't it?

goldengirl88
04-07-2014, 09:05 AM
Grief can be overwhelming at times. I know how you must be feeling. I am hoping you have better days ahead. Blessings
Patti

grapey
04-08-2014, 04:25 PM
Thanks guys. I'm thinking about going to a pet loss support group here in town tonight. I'm nervous, because I've never been to something like this, and I worry that I'll get too much upset. But I think it might be helpful, so I'm going to go even tho I'm scared.

goldengirl88
04-08-2014, 04:39 PM
I think that is a great idea. I would surely go if it were me. You can get a lot of support from others that are in the same situation. Then you know you aren't the only one feeling this way. To even be able to have someone to talk to about it is wonderful. At least you know the people there will understand. Good luck, you can do it. Blessings
Patti

apollo6
04-08-2014, 10:21 PM
Dear Jen
Words can not comfort at this time. Let us know how the support group goes. You are not alone in this grief. When you love so hard,you fall even harder. Elliot was beautiful.
Hugs Sonja and Angel Apollo

molly muffin
04-08-2014, 10:56 PM
Good luck Jen. We'll be right here if need us!
Support group can be very helpful. I hope you find what you need there.

hugs
sharlene and molly muffin

goldengirl88
04-09-2014, 09:22 AM
Jen:
Hope all went well at the support group. Thinking of you this morning. Blessings
Patti

grapey
04-09-2014, 09:08 PM
I went to the group and I'm glad I did. I cried a ton, but it was good to hear from other people who are facing the same feelings as me.

Hope you're having a good Wednesday.

Harley PoMMom
04-09-2014, 09:16 PM
((((Super huge loving hugs being sent your way))))

goldengirl88
04-09-2014, 09:17 PM
God Bless you, glad you went.
Patti

molly muffin
04-09-2014, 10:21 PM
Jen being able to share what you are going through with others going through the same thing lets you know that you aren't alone And that what you feel and think is very very normal. Grief just wipes you out emotionally and leaves you so confused. I am glad you went too.
Big hugs
Sharlene and Molly muffin

doxiesrock912
04-09-2014, 10:49 PM
Jen, it takes a strong person to recognize when they need help and an even stronger one to go through it.

I've been to counseling and it was the most difficult thing that I ever did but I am a MUCH better person having gone through it.