Monty, 12 year old beagle/border collie mix, trilostane question

[Robin81700]

Hi there.
I am so grateful to have found this board. My dog, Monty, is a 12 year old beagle/border collie mix and was diagnosed in March. Needless to say, I've been devastated. Up until March, you never would have known he was 12. He looked young with a thick dark coat of hair and never tired of playing ball or fetching the stick and we'd walk at least a mile every day together. But then the dreaded symptoms started - he was always thirsty, he began waking me up almost every hour to be let out, and he developed a sore on his foot that didn't heal. Of course I called the vet right away and I hoped we caught it early but I guess that doesn't make much difference.

He's on 60 mg of trilostane a day, and almost instantly, the symptoms cleared up. But then his back legs started going out and he could barely make it up the stairs. So the vet, who is excellent and on staff at University of Pennsylvania Vet Hospital, prescribed Dermaxx to the mix.

We are watching him closely and after a month on the medication, in April, his cortisol level was .02 (I think - I just know it was very good). The vet had us come in again at the beginning of this month and said if his levels were that good again, we would not have to bring him in for another 90 days. Well, unfortunately, his levels had risen, so now he wants to see him again on June 15, which is fine with me. I love this dog so much...well, I don't have to tell any of you about what that is like.

It's now May 28 and for the past week, Monty has been shedding like I've never seen any dog shed. Giant clumps of hair are everywhere. I've managed to terrify myself that the trilostane is no longer working even though none of the other symptoms have come back. There is also the beginnings of another sore on his foot.

Additionally, Monty eats great but I literally have to put the leash on him while he's stretched out on the sofa in order to force him to go for a walk. He's not lethargic per se, but he doesn't want to do anything but go outside and go to the bathroom and then he immediately turns for the house.

My heart feels broken.

Is this the way trilostane is and I just have to accept it and be happy my dog is alive? Again, I know he is 12 and that's a big part of it, but if you would have seen him six months ago, it's like a totally different dog.

I guess my reason for this post is to vent to people who care and understand, and also to ask if you think I better not wait until my June 15 appointment and should get him into the vet for cortisol level testing now. Is this excessive shedding normal for a dog on medication? I know it's a sign of Cushings but he never had that symptom until this awful shedding started last week.

I realize I've written a mini-series here and I'm sure I should just call the doctor, but I am also thinking of Monty. He's a smart dog and knows where he's going when he gets in the car and the vet traumatizes him. I hate to keep dragging him there every time I am a little paranoid. So I guess what I'm saying is if I hear from any of you that this excessive shedding and sluggish behavior is normal even while on trilostane, I will just wait until June 15.

Thanks so much for any help or comfort you can offer. I am sitting here crying typing this. I cannot imagine a life without this dog even though I know that at age 12, every day is a gift. But I would also be gutted if I thought he was in pain and suffering....his awesome appetite and the fact that he still wags his tail when he sees me is the only thing keeping me going right now.

[Harley PoMMom]

Hi and welcome to you and Monty from me and my boy Harley! I am so sorry for the circumstances that brought you here but I am very happy that you found this forum.

Cushing's is not a death sentence for a dog. With a confirmed diagnosis and a proper treatment plan a dog can live out the remainder of their natural life span.

The shedding that you are describing, to me, sounds like what we call here "blowing the coat." It is a natural process that our cush-pups go thru, don't be alarmed by this.

If Monty was playful and could/would walk a mile every day, then maybe the high cortisol was masking arthritis that he has.

I was wondering if you could tell us more about Monty, if you wouldn't mind. Was a CBC/Chemistry blood panel done on Monty? If so, could you post anything on there that is marked abnormal with the reference ranges and the units of measurements. How was his cushing's confirmed? With a LDDS test or an ACTH test? Was an ultrasound done on Monty? Could you post all test results for us please. How much does Monty weigh, and what dose is his Trilostane? The more we know about your precious boy the better our feedback will be. We just want to help you help your boy, ok. ;):)

Just remember you are not alone on this journey, we are here for you and Monty.

Love and hugs,
Lori

Here are some links that I think you will find interesting:

Dechra's U.S. Product Insert
http://www.dechra-us.com/File/prod_vetyrol.pdf

Trilostane/Vetoryl Information and Resources
http://www.k9cushings.com/forum/showthread.php?t=185

Links to Cushings Websites (especially helpful for new members!)
http://www.k9cushings.com/forum/showthread.php?t=180

[zoesmom]

Hi
He's on 60 mg of trilostane a day, and almost instantly, the symptoms cleared up. But then his back legs started going out and he could barely make it up the stairs. So the vet, who is excellent and on staff at University of Pennsylvania Vet Hospital, prescribed Dermaxx to the mix.

We are watching him closely and after a month on the medication, in April, his cortisol level was .02 (I think - I just know it was very good). The vet had us come in again at the beginning of this month and said if his levels were that good again, we would not have to bring him in for another 90 days. Well, unfortunately, his levels had risen, so now he wants to see him again on June 15, which is fine with me. I love this dog so much...well, I don't have to tell any of you about what that is like.

Can you get the exact numbers for that first ACTH test? If it was truly .2, then that number would be too low. I suspect it was probably 2.0 ug/dl or you'd have seen more severe symptoms of too much trilo. And also the numbers for the second ACTH, from early May, where the vet said his #'s were back up. (Also, please post any diagnostic test results too, as Lori already mentioned. ) No dose changes were made after the numbers went up, correct. The vet just said keep him at the same dose and retest in mid-June?

Your vet doesn't seem to be quite on target with the timing of the tests, but that's why we need the exact dates for all, including the start date of trilo, and the exact results. A dog on trilo should have that first ACTH at 10-14 days in. The second, about a month after that (barring any worrisome signs). And then every 3 mos, if all continues to go well. Any dose change requires going back to that original testing schedule. Looks like Monty's first ACTH was at a month? Also wondering why then a month and a half wait after the early May test. But maybe the results and test dates will explain more. Also, did you say what Monty weighs????


It's now May 28 and for the past week, Monty has been shedding like I've never seen any dog shed. Giant clumps of hair are everywhere. I've managed to terrify myself that the trilostane is no longer working even though none of the other symptoms have come back. There is also the beginnings of another sore on his foot.

The coat - sure sounds like he's blowing his coat. Many dogs will do that when their cortisol finally comes down and if so, would not be a concern. Some dogs will regrow luxurious coats - and sometimes with different colors evident. The weak legs could be from ongoing high cortisol levels OR from too low cortisol levels. OR from the cortisol now being controlled, which can allow previously suppressed arthritis to show up. Again, it's hard to say without knowing those test #'s.


Additionally, Monty eats great but I literally have to put the leash on him while he's stretched out on the sofa in order to force him to go for a walk. He's not lethargic per se, but he doesn't want to do anything but go outside and go to the bathroom and then he immediately turns for the house.

That he is eating good is a positive. But that he's lethargic is a little more concerning. Again, it could be his cortisol is borderline too low, for him anyway. Some dogs will also develop what we call cortisol withdrawal syndrome, where they act quite funky/puny when they first begin tx. They are so used to that high cortisol (its feel-good effect) that when their levels drop, they become rather listless and depressed. Not all dogs will have it and, yet again, knowing those test results would tell us more. Each monitoring ACTH test should have two numbers - the pre and post and we need to see both, for each test and the date (or the # of days after his trilo was started.) Also, how is his drinking, compared to pre-treatment? Any signs of loose stools?

So as you can see, we do ask lots of questions. But that's pretty standard around here. It will help us to help you better understand Monty's situation. Do not despair. We have many here whose dogs have lived a long and good life on either of the cush drugs - and many do go well beyond that 2 year prediction. My Zoe got four more years, thanks to trilostane. Sue

PS - on the foot sore . . . some cush dogs - even those who are being well-maintained on tx - can still be more prone to infections so you just need to keep a close eye on that kind of thing. In many cases, infections will slow down with lowered cortisol.

[Robin81700]

Oh wow, thank you so much. I feel like an idiot - I do not have any of the information you are asking other than my dog weighs 65 pounds.

I am relieved to know about "blowing the coat" because that's a perfect description for what's happening.

That being said, after reading the concern about Monty being somewhat lethargic, I will call my vet for an appointment now and when I'm there, I'll get a copy of his records and report back.

He was monitored correctly - I was writing so much I was trying to abbreviate in places I could. But yes, after two weeks, and then a month...and when his levels were slightly higher the second time after a normal level ( which he achieved almost immediately -after only two weeks), the doctor was concerned and had me come back sooner. He was diagnosed in March and has already been tested two times since on trilostane. He was going to be put on the ninety day schedule but due to the rise, the doctor wanted to see him much sooner.

You can google my doctor - he's pretty wonderful. Dr. Steven Radbill. I have utmost faith in him and he explains everything carefully and in great detail - I am the neurotic who hears white noise when he tells me my dog has Cushings and what that entails. I should have taken a pen and paper and written things down.

I can't thank you all enough. Just knowing this forum exists and I have a place to not only ask questions but receive support and offer comfort to others makes me incredibly comforted. With the holiday weekend, I will probably not be able to see the vet until the middle of next week but I will report back with his numbers and all other news then.

xo
Robin

[Harley PoMMom]

Hi Robin,

Please do not feel like an idiot, you are not, many of us, including me when I first came here did not have the copies of the tests either. ;):) But I do now, if fact I keep copies of every test Harley gets done, his vet has it marked in his file that I get a copy of all tests done on him. These copies come in handy incase of an emergency situation and one has to take their pup to an Emergency Clinic, the Dr on duty would be very grateful to have/see copies of all tests done on ones pup.

I took Harley to the Matthew J. Ryan Veterinary Hospital of the University of Pennsylvania in Philadelphia, PA. He has had 2 ultrasounds done there and was seen by Dr. O'Neill.

With Trilostane a dog has to be tested a certain way. Their ACTH stim test has to be 4-6 hours after their dose of Trilostane. Trilostane should be given with food to be absorbed properly. Some of us, whose pup's tummies seem to mind the meds, give our pups Pepcid AC 20-30 minutes before their cushings med...be sure to ask your vet about this first.

Robin, we are definitely here for you and we are the best hand-holders! Please ask all the questions you want and we will try to answer them the best we can, ok! ;):D

Love and hugs,
Lori

[Nathalie]

Hi Robin,

I just wanted to drop-in and welcome you as well.:)

I am treating my Phillip’s cushings with Lysodren but can I ever relate to the excessive shedding. When my Phillip’s cortisol first came down I thought he would end up naked. :eek:
He is a Collie/Beagle mix and looks from what I can make out from your Avatar similar to your Monty. We do have an album section, feel free to upload pictures – I would love to get a better look at your Monty.

Anyhow, getting back to the shedding – after I thought I would have to get him a coat for the winter it suddenly stopped and he grew this really thick and longer coat that even had a bit of curl at the ends. As a matter of fact, he grew hair where he never had any. Now he blows his coat 2x per year for about 3 months, takes a bit of a break from shedding to re-grow all this wool and then we start all over again.
I got fur tumble weeds at my house right now – they are going to float around until the shop vac comes out because my regular vacuum cleaner can’t handle the amount of hair.
:o
Sue and Lori have given you some good feedback and ‘homework’ – you are in the right place.

I am just wondering – was Hypothyroidism ruled out? Some of the symptoms of cushings and hypothyroidism overlap eg. hind end weakness, skin issues, poor healing, excessive shedding etc.
Hope you are starting to feel a bit better – you are not alone.
Nathalie

[Casey's Mom]

Welcome Robin and Monty! You are not alone and have joined a wonderful site with some very knowledgeable and experienced "cushparents".

My dog blew out her coat as well, not to worry. It looks like you are getting wonderful advice. Stay with us and ask lots of questions, okay?

Love and hugs,

[Harley PoMMom]

I am the neurotic who hears white noise when he tells me my dog has Cushings and what that entails. I should have taken a pen and paper and written things down.
xo
Robin

Oh Robin, you should have seen me when I was told Harley had Cushing's :eek::confused::eek: I couldn't form words and my eyes were red and swollen because of all the crying I was doing...Thankfully I found this forum with these amazing and knowledgeable people.

One item I did find that helped me was a tape recorder. I would write down the questions that I wanted to ask as they would come to me on Harley's "note pad." If I thought the question needed an answer right away I'd call the vet/IMS; if the answer could wait until Harley's next appt. then I would take the note pad and the tape recorder with me on the next appt. I tend to get a little flustered sometimes so the note pad and tape recorder helped me alot.

Love and hugs,
Lori

[zoesmom]

Robin -

Chances are, since Monty isn't showing any other signs of too low cortisol (loss of appetite, diarrhea, vomiting, weakness/difficulty standing), his lethargy is most likely from the cortisol withdrawal effect. This can happen to some dogs, in the absence of too low cortisol and it usually passes within a week or two, depending on the dog. If his first ACTH was around 2.0-ish, that would inded be in the target therapeutic range. The second test, where his 'levels had risen', seems a bit unusual. But then again, that would depend on just how high those levels rose. If they climbed back up over 7 or 8 ug/dl, I would wonder if the testing that time was done in the same manner (i.e. like Lori mentioned on the timing . . . 4 - 6 hours post-pill and with pill given with a light meal . . . or at least consistent with his previous ACTH) Many dogs will continue to have their levels drop slowly over the first month or more. So just keep a close eye on Monty because with a reading of 2-ish at two weeks (if that's what it was), he could conceivably go lower. Will be watching for the specifics on all of Monty's tests. Sue

[littleone1]

Hi Robin,

Corky and I also want to say hi and welcome you and Monty to a very wonderful group of very caing, supportive and knowledgeabe people.

I know exactly how you feel. I'm still in the learning process. Corky is being treated with Trilo. I was also afraid that he was lethargic after a couple of doses. His IMS told me to see how he was the next morning and to give her a call before I gave him his next dose.

He was good the next morning. It's similar to withdrawal symptoms that people get. Our pups are use to high cortisol levels, and when the level drops I personally feel that it is a shock to their systems.

Corky's dosage has had to be adjusted twice. His last stim showed that his cortisol level dropped a little. Everytime there is a change in the dosage, I know that my IMS wants to check Corky's level 30 days after the change. If the dosage doesn't have to be changed, then Corky goes back in 3 months. Even though your vet might schedule a stim for 3 months, there's always the possibility that you might have to have a stim test done sooner if you start to notice any clinical signs returning.

Terri and Corky

[Robin81700]

Hi there:

Well, it's been almost two years and my 13 and a half year old dog, Monty, continues to hang in there with Cushings. But the mange is back and this time we can't get it under control. The vet prescribed six monthly Promeris treatments back in March, which did nothing and now I read it's been recalled and is deadly so that confirms my deepest fears - that the medicine we've been trying to help him with was almost killing him. I also should mention he's on Trilostane and has handled it very well.

I asked my vet for an alternative to Promeris and was shocked when he told me he'd have an answer by Thursday. This does not comfort me or instill confidence...the fact that he doesn't know and is still recommending Promeris. I read a thread here that the mange is "easily treatable" but I don't see what the treatment is.


So any mange advice you can give me would be greatly appreciated. To be honest, Monty will be fourteen soon and I don't want to subject him to any more painful tests or start over with a new vet. He's doing fine other than the mange, his appetite is great, he's very loving and can still jump up on the sofa...but oh, his chest is an angry red and so are both flanks and if anyone can come up with the name of a medicine I will be so unbelievably grateful.

Moderator's Note: I have merged your update on Monty into Monty's original thread. We usually like to keep all posts on a pup in a single thread as it makes it easier for other members to refer back to the pup's history, if needed.

[addy]

Well, I don;t have any experience with Mange other then knowing there are different causes. What type of mange is it?

Maybe someone will know.

Hugs,
addy

[Robin81700]

It's demodectic.

He had the skin scrape and it was confirmed. It comes and goes in weird spots but right now it's the worst it's been and the fact that my vet didn't have a ready answer worries me that there might not be a ready answer. I really don't want to lead you to believe I don't like my vet - he's amazing and smart and I've used him for over 30 years. This whole Promeris thing is the first time I've really doubted him.

[Harley PoMMom]

This website offers additional suggestions for veterinary treatments for demodicosis: http://vetmedicine.about.com/od/dogdiseasesconditions/a/Demodex.htm

[Robin81700]

Ah, I found that article, too, but thank you so much for linking it. The problem is, Monty does have some collie in him, which eliminates the most effective treatment. I'm a little nervous that this article also mentions Promeris. I guess I'll see what the vet says on Thursday but if anyone else has anything to add, I'd really appreciate it.

[Squirt's Mom]

Hi Robin,

Good to hear from you and Monty again! Also good to hear that he is doing well on the Trilo. Has he had an ACTH lately? If so, would you mind posting the results? I ask for several reasons but primarily right now because of the mange. Cushing's, especially un- or loosely controlled, could help maintain an environment where these mites can flourish.

If memory serves me, my Crys also had this form of mange when we found her and she was given Ivermectrin and Ketoconazole, and she was bathed in Pharmaseb shampoo. I KNOW those were the meds she was given, but am not sure of the type of mange - she may have had Sarcoptic mange. Crys was very young and had been starved so her system was in very bad shape at the time. She did not handle the Ivermectrin well at all but it did help. As her immune system improved, the mange went away and never returned.

What you may have seen referenced as "easy" was in reference to the Sarcoptic mange, which is scabies and easy to control. Demodectic, or red mange, is more difficult to manage.

I remember my granddaddy and others on the farm in Miss. dipping dogs in creosote to treat mange. :eek:

Hugs,
Leslie and the gang

[lulusmom]

Hi and welcome back.

I am a small dog rescuer and have used Promeris extensively for demodex mange, mostly puppies. It was extremely effective and many of us within the rescue community were shocked and kinda bummed it was discontinued. The alternative is Ivermectin, which also works, but is not as fast acting. This drug can be extremely toxic for herding breed dogs if they have a mutation of the multi-drug resistance (MDR1) gene. I know that tests can be done to identify this gene so you may want to talk to your vet about it. My brother's Australian Shepherd had cancer and he could not take two of the drugs as tests showed that he had the MDR1 gene on both sides of his lineage.

I am concerned as to why Monty has demodex mange after being on treatment for almost two years. Adult dogs do not get this type of mange unless they have an underlying condition that is compromising the immune system and most cushdogs are usually stabilized within the first six months of treatment. Nevertheless, the likely suspect in Monty's case is still cushing's and something tells me that his cortisol is too high. Can you please get copies of the last acth stimulation tests that were done and post the results here? It's very easy as there are only two numbers to post, a pre and a post. If you don't have copies, your vet should be happy to provide them for you.

We do like to look over vets' shoulders here so that we have a good understanding of Monty's history. Also, time and time again, we have seen general practitioners who ultimately reveal themselves to be quite inexperienced in diagnosing and treating a cushdog. My own gp vet, whom I adored, let us down and my Lulu paid the price for it. Since that time, I've spent six years of obsessive research on the disease and its treatments so that I never have to place blind faith in any veterinary practitioner again and that includes their current internal medicine specialist.

I went through at least eight gp vets in my old neighborhood, trying to find anybody who was experienced with cushing's. Most did not know how to assess an acth stimulation test for purposes of monitoring treatment and I would get calls telling me that both of dogs' cortisol was either too low or dangerously low. They were never too low, they were either right where they needed to be or even too high. The problem is that without proper training, these vets don't know that you cannot use a lab's normal reference range for purposes of monitoring treatment. The post stimulated number for a cushdog should actually fall within the normal reference range for the baseline (prestimulated)cortisol, which is 1 - 5ug/dl. It can run as high as 9 ug dl if the dog is being treated with vetoryl (trilostane) and is not symptomatic. The acth stim test results will help determine if cushing's is the cause for the weakened immune sytem.

Glynda

[Robin81700]

Oh wow, thank you so much for this information. I've been putting blind faith in my vet and don't know the actual numbers - all I know is at the time of the last test, which was in April, Monty was borderline - he tried to give me an example on a one to ten scale and said he's a ten but that we should "let him be" and I took that to mean there's nothing more to do and he's almost 14, why put him through more tests and the anxiety associated with a vet visit.

Now I'm freaking out that Monty is paying the price for my actions. I have to call and set up a new test and have dragged my heels because I've been panicking that once the vet sees this mange, he's going to tell me to put him down. I know how irrational that sounds but I think this whole situation has made me that way. I love this dog so much - I am sure you can relate - anyway, so glad I posted here because it's clear I need to get him looked at right away and if I don't agree with what the vet says once I run it by you, then I will find a new one.

[lulusmom]

Hi again,

If Monty's cortisol is too high, you need to get it down so that you can get the mange under control. I know this to be true because I had a little Shihtzu who came out of the shelter with ringworm and then the worst case of demodex I've ever seen. She was on Ivermectin and Clavamox for several months and was ultimately diagnosed with cushing's. One month after starting treatment, you never would have known it was the same dog.

Neither demodex or cushing's is a death sentence and both are managable so no more talk about Monty being put down. If your vet remotely hints that you might want to think about euthanasia, I would suggest that you definitely find another vet, or better yet, an internal medicine specialist or even a veterinary dermatologist.

I promise, we'll get you and Monty through this. You can help us do that by making sure you get copies of the last two stim tests so we have a much better handle on what is going on.

Glynda

[Robin81700]

I am calling first thing tomorrow morning and again, I cannot thank you enough. One other thing I wanted to run by you since you are so knowledgeable - Monty already takes two 60 mg trilostane per day. I was under the impression that's the highest dose that can be prescribed...am I wrong about that, too? That's the other reason I've been terrified to have him tested.

[lulusmom]

No, 60mg twice a day is not the highest dose you can give. Every dog metabolizes the drug differently so two dogs weighing the same amount could require very different dosing. For instance, my 4.5 lb Pom was stabilized on 30 mg once a day. Members with dogs twice or three times her size stabilized at 10mg. You just never know. I think you are doing the right thing in getting testing under way. We'll be here to get your full report so don't forget, okay?

Glynda

[Squirt's Mom]

Hi Robin,

Don't beat yourself up. You've been operating on faith in your vet - which is pretty normal, ya know. ;) But your vet isn't the final say in when it is time for Monty to go - Monty is. As long as he has the will to fight, and you by his side, he should do just fine with the proper treatment.

Keep talking to us, sharing the details and, as you can see, you will get some great feedback and shared experience. You're on the right track so keep up the good work! And do get copies of the test results in AP and the upcoming test.

Hugs,
Leslie and the gang