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aallegre
05-13-2016, 04:39 PM
Hey all!

I thought I'd posted this already, but it looks like my original post timed out and I lost the content...

Basically--about a year ago now, my senior dog, Percy, presented with a heart murmur that he had never had before and which rapidly increased in severity over the course of a month. My vet also registered some PVCs which were not always detectable on examination but more likely related to stress. (He's the anxious sort).

Took him to a cardiologist, did a cardiac ultrasound, and some mitral valve disease was detected, but the heart was otherwise normal. The cardiologists suggested that he had inflammation elsewhere in his body, and so we did an abdominal ultrasound. We actually did this through the oncology department as I have a storied history with them thanks to my middle-aged female dog having undergone a full course of radiation for a mast cell tumor. In case it was cancer, I wanted to get oncology on board immediately.

Of course, since we had oncology do the ultrasound, he had no evidence of cancer whatsoever (which, in itself is fairly remarkable in this day and age for a dog over the age of 8), but he did have nodules on his adrenal glands and one very enlarged adrenal gland, pointing to Cushing's and we did the initial urine test that would dictate further testing. Came back indicative of Cushing's. Before beginning treatment, my primary vet consulted extensively with the internist and they agreed that his Cushing's was likely pituitary and not adrenal, despite the nodules on the adrenal gland and the one enlarged portion (I guess it's shaped like a butterfly, kind of, and one of the 'wings' was very large).

I've seen anecdotes similar to this but with no determination of whether that Cushing's ended up being adrenal instead of pituitary. The thing with adrenal Cushing's, as I understand it, is that it's usually caused by a very aggressive tumor on the adrenal gland and dogs typically go downhill quickly.

Percy, for his part, aside from the panting, excessive thirst and mild potbelly was fairly normal.

He did go the opposite way, initially, and have a decrease in appetite, losing almost all interest in food. But these days, when he is symptomatic, he's ravenous.

So, at this point, we have not reached a maintenance dose, because while his last 30-day STIM test was normal, his first and only 60-day stim test was a bit too high, and his symptoms were still not entirely under control.

So, now we are back to 2-4 weeks since we've changed the dose (currently 150mg of Vetoryl) and his symptoms are poorly controlled--but he was without the additional 20mg for a few days as I ran out of capsules.

He seems to have an increased need to have bowel movements, and they are alternately soft or normal. Diet-wise, he is on a raw diet which should almost always produce firm, dry stool, and which he has less need to have a BM on, but I do sometimes give him quality canned food, because he is old, and he is picky, and I choose my battles. So when he has soft stool on the canned food, it's easy to see why.

His hind end has also been weaker--occasionally he will just sort of fall for a second behind, for no reason, but this has been infrequent, and may be attributable to the temporary lapse in higher dosage (though I understand hind end weakness/stool change is also listed as a potential side-effect of the medication, so it's hard to say what is causing it).

It's also hard to say how much of this is related to actual old age. Unfortunately, I live in a third floor walkup, which is good in the sense that he is forced to stay stair-fit, but also a bit worrisome as he becomes more unstable. He's a 70lb dog, and while I've carried my 50 and 65lb dogs up the three flights of stairs, Percy is also large, rectangular and long (he has some greyhound in him) and does not like being picked up, so I hope we don't come to that point.

If he is not controlled STIM-wise and symptomatically by 180mg, my vet suggests re-ultrasounding the abdomen.

I don't need to tell you all how expensive this has been, and we are well beyond the policy limits for the condition on his insurance, so I won't be reimbursed for anything until some time in August when his policy renews. It's been a bit brutal, especially not having the dosage under control and needing a STIM literally every month or more often.

He was mostly under control symptomatically for a while on the 120mg, pot-belly went away, panting was less, thirst was less, but then it came back again leading to the most recent increase.

I guess my questions are:

- Has anyone dealt with a dog that required a very high dosage of Vetoryl before the symptoms were under control?
- Has anyone high-dosed a dog assumed to have the pituitary form of the disease and then realized it was the adrenal form of the disease?
- Is the 2-year life expectancy really the average expectancy after diagnosis? I know we are talking about older dogs, generally, but this dog (he was "7" when I adopted him 6 years ago--but his teeth (x-rayed because he needed a partial root canal) actually put him somewhere between 8-10... so we are talking about a dog that could be anywhere from 13-16 (I call him 13/14 to be judicious) with no other apparent health problems.
- Any other tips or advice on dealing with his current situation?

Thanks! Cushing's sucks. Cancer was actually easier. :/

DoxieMama
05-13-2016, 05:19 PM
Hi and welcome to you and Percy! It sure sounds like you've been through the wringer with him and your others. Bless you for going the extra mile (and beyond!) to provide them with such fantastic care.

You've provided a great deal of history, which is excellent. Would you happen to have the results of his latest Stim tests? The actual numbers, I mean. We're all about seeing the actual numbers... it helps give a very clear picture of what's going on (rather than just saying he is or is not under control).

As for your questions, the only one I can really address is the one regarding life expectancy. From what I've read, that seems to be a general statement that is NOT true, especially when you get that cortisol and the symptoms under control. There are numerous dogs who have lived for many, many years with Cushing's, and when they do pass on, it's often due to old age or some other, unrelated issue.

Hopefully one of the admins or other more knowledgeable folks will be by shortly to answer your other questions.

Hang in there!
Shana

molly muffin
05-14-2016, 12:02 AM
Hello and welcome to the forum.

You never know what dose any dog will end up needing as they can all be different. We do have some who end up needing high doses with pituitary Cushing's but in general adrenal Cushing's is harder to get control of than pituitary with medication. They tend to bounce around more I think.
Did the vet say why they are discounting the enlarged adrenal and think it is pituitary form?

Life expectancy is based more on the age the dog is when diagnosed and what the natural life span of the breed is. So an older dog diagnosed at 13 with a life span of 15. The two years would probably fit more than a 7 year old with a normal lifespan of 15. They might life with with Cushing's for many years if all else is okay.

It would be helpful if you can provide the actual numbers of the ACTH monitoring tests and any other blood, urinalysis that is high low? This helps us to give you better feedback.

aallegre
05-15-2016, 01:15 AM
Thanks! I did used to want to go to vet school, but then I just got a bunch of high-maintenance medical animals, instead. ;)

My vet always tells me over the phone, and I have a terrible memory, but I can get the actual numbers from him. I want to say the most recent test that was just slightly too high. In this scenario we are allowing for the fact that the drug manufacturer states that slightly high numbers are OK if the dog is controlled symptomatically, but Percy's issue has mostly been that his numbers were 'good' but his symptoms were not under control, and now both his numbers and his symptoms are a bit undesirable. Then both numbers and symptoms were under control until the last test when his numbers came back high and oddly enough, he'd had no return of symptoms until a day or so before my vet told me the number was high. I won't bother guessing at the numbers here, but will wait until I have them in hand.

Adrenal was ruled out primarily owing to the aggressive nature of the tumor that would cause the adrenal form of Cushing's and associated symptoms he would have had, having an adrenal tumor of that nature. Vetoryl would theoretically also control both the adrenal form and the pituitary form, so we opted to pursue treatment and see if it helped rather than do a more invasive diagnostic. His oncology and internal medicine consult was at UPenn, so I'm pretty confident in their assessment of this not being the adrenal form (though they could be wrong, they did examine the possibility extensively). His initial symptoms were mild and atypical, and his associated cardiac symptoms did seem to remit with treatment as well, suggesting the imbalance was at least somewhat under control.

He hasn't been on the 150mg for quite long enough to see the results we'd expect, and the lapse in dosage (substituting the additional dose with a compounded liquid form that was gifted to me while waiting for the additional vetoryl capsules to arrive) doesn't provide a good case study for whether this particular dose increase is working for him.

If his symptoms are not under control, performing an additional abdominal ultrasound would likely answer the question on whether there's other, more problematic changes to the adrenal gland, or whether there is something else going on, but Percy has actually been the easiest dog I've ever had, medically, refusing to age until this year, but now doing so with gusto. I just feel pretty bad for him and want him to be comfortable.

As far as hind end weakness, I've seen people listing this as a symptom of Cushing's... is this common as a symptom? Or is it usually attributable to the medication? Old age can cause this as well, of course, but he's an active and fairly robust senior--people never believe me when I tell them how old he is.

I'll try to get those numbers!

DoxieMama
05-15-2016, 09:13 AM
You can always get copies of the test results. I never used to ask for them, like you my vet would always call and tell me. But now it is routine for them to make me a copy.

It will definitely be helpful to know what those numbers are. From the manufacturer's recommendations, a post cortisol level between 5.4 and 9.1 is ok as long as symptoms are controlled but if they're not, then you want that lower (but not too low!). Have you seen their monitoring flowchart (http://www.dechra-us.com/Admin/Public/DWSDownload.aspx?File=%2fFiles%2fFiles%2fSupportMa terialDownloads%2fus%2fUS-046-TEC.pdf)? It outlines things very well.

Muscle weakness, especially in the back legs, seems fairly common. But like most of the symptoms of Cushing's, there are also dogs that don't display that symptom. Mine does, and I figured he was just getting old. But just having been on medication for a little over a month and he is already showing a bit of improvement - more willing to tackle the stairs himself and even trying to jump onto things again (not necessarily a good thing, considering he's a dachshund with a bad back). Hopefully you can find the dose that works for Percy, and he can make it up those stairs on his own!

My Baby Sugar
05-15-2016, 11:51 AM
Welcome to you and Percy. My dog Sugar has had Cushings for well over 5 1/2 years. She will be 15 in August. For the first 4 years she did very well, only minor issues. But in the last year and a half, she started to slowly decline. Her hair is now thin and she has lots of hindleg and hindquarter weakness. Perhaps the cushings combined with older age. She is considered controlled. So ,dogs can live a lot longer than the 2 years we seem to hear about. I wish you the best . Debbie

aallegre
05-20-2016, 05:17 PM
Okay!

If anyone is still out there--finally got the results

So, for the first few tests, he was getting tested off of the medication--in other words, he had his medication at night and the test in the morning. For the last test (4/16) he had his medication the requisite amount of time right before the test.

2/18/2016

Pre-ACTH Cortisol: 1.0
Post-ACTH Cortisol: 1.3

4/16/2016

Pre-ACTH Cortisol: 8.4
Post-ACTH Cortisol: 12.4

He is finally consistently on the 150mg and his symptoms are much better controlled right now. Since he only started it consistently yesterday, I'll do the next test in 2 weeks or so.

DoxieMama
05-20-2016, 05:30 PM
Yep, still here! :)

I'm glad that Percy's symptoms are better controlled on the 150mg. How's he doing on the stairs now?

labblab
05-20-2016, 05:41 PM
Okay!

If anyone is still out there--finally got the results

So, for the first few tests, he was getting tested off of the medication--in other words, he had his medication at night and the test in the morning. For the last test (4/16) he had his medication the requisite amount of time right before the test.

2/18/2016

Pre-ACTH Cortisol: 1.0
Post-ACTH Cortisol: 1.3

4/16/2016

Pre-ACTH Cortisol: 8.4
Post-ACTH Cortisol: 12.4

He is finally consistently on the 150mg and his symptoms are much better controlled right now. Since he only started it consistently yesterday, I'll do the next test in 2 weeks or so.
Welcome back, and I'm surely glad that Percy is doing better. However, I'm confused by the ACTH results you posted above. What dose of trilostane was he taking in conjunction with both of the tests? Was it a lower dose in February or a higher dose?

If you're saying that prior to the 2/18 testing, he was being tested 12+ hours after taking the medication, his ACTH results were scary low since they would undoubtedly have been even lower 4-6 hours after dosing. Based on those results, his dose should have been lowered, but I'm thinking that instead it was increased? But then you still ended up with the April results that are too high?

Something is really, really screwy here :o. Are you sure about those February numbers?

Marianne

molly muffin
05-23-2016, 11:47 AM
hmm, yes it would be good to know what the dose was in Feb and in April. Was it higher in feburary and the test was done 12 hours after the dose? Then you lowered it to 150mg? Because Feb is too low.

aallegre
05-23-2016, 03:22 PM
Yep, I'm sure about the numbers--had the entire report faxed over. The reference range on the report is 6-18, so he stimmed within normal range. He was on 120mg in February and 120mg in April--the premise behind testing so long after dosing is to monitor how well-controlled the cortisol is in the dog's system, outside of recent dosing. Increased to 150 after April's test came back high. My vet is a smart guy and is up on all of the most recent studies, so I trust his reasons. However, it is possible that we had already switched him to morning dosing before the Feb test, but I can't recall now. He was pretty well symptomatically controlled from Feb-April but started being symptomatic again right after the April test.

He's doing okay on the stairs--a little better, I think--sometimes he takes them a little too fast and slips at the bottom (I have traction tape on all of the steps but not the landing) and he's been well-controlled with no negative side effects on the 150mg for almost a week now. Drinking is more normal/less desperate, less panting, less need for bm and a good appetite (maybe a little too good, though).

The concern with the April test was that his numbers were so high even though he'd definitely had the medication 4-6 hours prior. I actually almost wondered if he'd found a way to hide it and not eat it or something. He'll have the next test in about 10 days, and hopefully the numbers will be good. Would be really nice to not have to increase him again, go a little longer between tests and not have to re-ultrasound him!

Harley PoMMom
05-23-2016, 04:01 PM
The reference range on the report is 6-18, so he stimmed within normal range.


Those reference ranges are for a dog that does not have Cushing's. For a dog with Cushing's and that is being treated with Trilostane the therapeutic ranges are 1.5 ug/dl - 5.4 ug/dl, and if all clinical symptoms are controlled that post number can go as high as 9.1 ug/dl.

This information is in Dechra's product insert and can be found here: Dechra's U.S. Product Insert (http://www.dechra-us.com/Admin/Public/Download.aspx?file=Files%2fFiles%2fProductDownload s%2fus%2fvetoryl-5mg-pack-insert.pdf)

Hugs, Lori

Renee
05-23-2016, 04:22 PM
It looks like you've switched to testing according to protocols (4-6 hours after dosing), however, I sure would like to comment on your vet's reasoning for testing upwards of 12 hours or more after dosing.

I can see why he might be interested in knowing how quickly cortisol is rebounding, but the danger of relying on this method to assess the effectiveness of vetoryl is that you'll never know how low the cortisol is dropping at its peak level. When you test within the standard window of 4-6 hours after dosing, you should be getting a cortisol reading when the medication is at it's peak, and therefore, you should be able to see exactly how low it's dropping. For that matter, many clinicians have actually switched to testing within 3 hours, as it may be a better representation of how low cortisol is dropping.

It's simply too dangerous to rely on a test that is done so late after dosing. An over-dose could easily happen. I am so glad Percy did not experience that!

aallegre
05-23-2016, 04:46 PM
Hmmm... interesting--we actually only switched to the 4-6 hour window based on my insistence that we try it that way.

I've worked with my vet for many years (used to actually work with him at his previous practice) and I like working with him because he trusts my suggestions and trusts me to know my animals. I primarily use him for standard things and go to Penn for anything special, but he usually has good reasons and will consult with specialists and the drug company if he has any doubts. Percy's test results tend on the higher side, consistently, so I don't think he's at risk for going too low and I have been vigilant for any signs of crisis, but the difference between his symptoms on 120mg vs 150mg is pronounced.

I think the Feb/April test results may have been not ideal examples, especially as I can't remember if we did the standard testing in Feb or not.

I guess I'm mostly wondering if there are dogs out there on 180mg. Just seems so high. As I mentioned before, though, if no improvement is seen by 180mg we will re-examine and consider adrenal-based Cushing's. The folks at Penn were pretty confident that the nodule on the adrenal gland was not the root of the issue, though.

I still feel like he needs to go out a little more often than he used to, but he is the first dog I've had that has avoided symptoms of old age this long, so it's hard to tell what is attributable to the disease and what is merely a product of being an older gentleman. He doesn't have any accidents in the house or anything of that nature if I leave him at home (my dogs usually come with me to work) but if he's with me he will ask to go out, usually to pee, sometimes also to poo.

Thanks for all your input so far! His next STIM test is scheduled for next Thursday so I'm hoping for nice, balanced numbers.

Harley PoMMom
05-23-2016, 10:43 PM
Just be aware that increased drinking/urination are common signs of a dog with too low cortisol.

aallegre
05-24-2016, 01:25 PM
I will keep that in mind--since the dosage increase he has been drinking less, no extra potty trips.

He has always, for the six years I've had him, been a pretty hearty drinker, so it's a harder symptom to monitor as 'abnormal' for him.

I feel his abdomen is a little more pot-bellied than it was before as well.

aallegre
06-15-2016, 12:26 PM
Hi again! So, most recent stim test- done approximately 3.75 hours after dosing (150mg) results:

Pre: 1.1
Post: 2.5

His CBC/Chem came back largely normal, his ALT was 128--slightly over the high normal of 125, but he has always fluctuated a bit oddly with liver values and it's not high enough to cause concern at the moment, but something to watch.

He is happy and comfortable--eating and drinking normally--seeming a little sturdier on the steps, though still tiring pretty easily on walks, he also is out of shape as he hasn't had much activity the past few months. And he's at LEAST 13 (and I think that's generous), so I mean, he has some rights to get tired on walks.

Harley PoMMom
06-15-2016, 01:01 PM
Glad that Percy is doing well on treatment, however, those ACTH stim numbers are getting a bit low. The signs of cortisol dropping too low are lethargy, loss of appetite, vomiting, diarrhea, or Percy just not acting himself, if Percy would display any one of those symptoms withholding the Vetoryl is needed along with an ACTH stimulation test.

Hugs, Lori

lulusmom
06-15-2016, 03:11 PM
Hi and a belated welcome to you and Percy.

I've just read through your thread and wanted to answer whatever questions had not been addressed and ask a few of my own. Please see my comments in blue text below:




I guess my questions are:

- Has anyone dealt with a dog that required a very high dosage of Vetoryl before the symptoms were under control?

My 4.5 lb Pomeranian was getting 30 mg once daily of compounded trilostane which is a huge dose for a tiny girl. My other cushdog, Jojo, was a bit heavier at 6.5 lbs and he stabilized on 15 mg twice daily. This scenario is not uncommon in little dogs whereas it would be in a big dog. There is actually a study that suggests larger breeds may require much smaller doses to achieve effective control. Vetoryl (trilostane) is a fat soluble drug and is much better absorbed with food. Are you giving Percy his capsule after a full meal? That's very important to know in order to rule out malabsorption as the cause of lack of response in such a high dose.

- Has anyone high-dosed a dog assumed to have the pituitary form of the disease and then realized it was the adrenal form of the disease?

In my experience, that rarely happens if appropriate testing is done. If a suspected adrenal tumor is functional and is the cause of clinical symptoms, an abdominal ultrasound would normally show one enlarged adrenal gland. The contralateral gland would be much smaller or not even visualized due to atrophy as result of lack of use. If Percy's contralateral gland was normal or slightly enlarged, chances are great that he has pituitary dependent disease. It is very rare, but dogs can have both forms of the disease. Your vet could have done an endogenous acth test before starting treatment that could have helped with differentiating but once you start treatment, it's really not possible.

- Is the 2-year life expectancy really the average expectancy after diagnosis? I believe others have already shared their opinions with you but I would like to reiterate that the two year thing is truly based on the average age of dogs at diagnosis. If your dogs is well under his/her life expectancy, that two year prognosis doesn't mean a thing. My first cushdog was diagnosed at only three years old and lived another nine years. Her story is not an not an anomaly. We've seen the same in many, many dogs here.

- Any other tips or advice on dealing with his current situation? My best advice has never changed since learning from the amazing folks here when I first arrived many years ago. Educate yourself so that you can be the best advocate possible for Percy. Successful treatment is greatly facilitated when an experienced vet and an educated pet owner work together. It's when one or both are missing, that a dog can get into trouble. Take the time to learn proper protocol, both dosing and treatment monitoring. Lori already provide you with Dechra's product insert but I'm including the url to Dechra's Continue Education (CE) page that has an actual treatment monitoring flow chart that can help you assess Percy's acth stimulation tests, along with your vet.

http://www.dechrace.com/pdfs/vetoryl/VETORYLTreatmentMonitoringBrochure.pdf

Thanks! Cushing's sucks. Cancer was actually easier. Unfortunately, the prognosis for most dogs with cancer is much worse than for those with cushing's. Cushing's is definitely not a death sentence. I got my bouncy, active dogs back with treatment and was able to spend many years with them post diagnosis.
:/

Whiskey's Mom
06-15-2016, 08:07 PM
Hi again! So, most recent stim test- done approximately 3.75 hours after dosing (150mg) results:

Pre: 1.1
Post: 2.5

His CBC/Chem came back largely normal, his ALT was 128--slightly over the high normal of 125, but he has always fluctuated a bit oddly with liver values and it's not high enough to cause concern at the moment, but something to watch.

He is happy and comfortable--eating and drinking normally--seeming a little sturdier on the steps, though still tiring pretty easily on walks, he also is out of shape as he hasn't had much activity the past few months. And he's at LEAST 13 (and I think that's generous), so I mean, he has some rights to get tired on walks.

Hi! I'm not trying to scare you and I'm far from an expert but I just had a situation with Whiskey that could have ended badly. I hope to explain in my own thread when I have more time but please be careful. That 1.1 pre scares me. Whiskey was happy and doing well too and our last ACTH since DEcreasing his dose had a pre of below 1! That was on 10 mg daily and he weighs 68 lbs. He showed no signs of low cortisol except soft stool which we thought was an infection & he was being treated with antibiotics. I shudder to think what could have happened and I feel so bad that our boy was probably feeling terrible inside. Again I'm not trying to be dramatic or a know it all, but outwardly he was fine. As Lori said they only need one of those symptoms. I did not realize that. He is off the Vetoryl now, doing good & we will retest on Monday. Your last paragraph in the above quote sounds just like my Whiskey! :p All the best to you & your pup.

aallegre
06-17-2016, 03:30 AM
It's interesting, but I just came to check here after noticing that Percy has seemed less comfortable today. He was very very uncomfortable before treatment started but I do wonder if maybe his symptoms are result of the medication at this point. He is being weird about food but he was also being weird about food before he started treatment. His stool is mostly normal but occasionally some are soft. I typically give him his capsules and then feed him his meal or hide the capsules in with the meal. I always make sure that he eats something. I even have gross canned food on standby for the days that he doesn't want his raw food. Which seems to happen more frequently now. I think I might talk to my vet tomorrow about taking him off of the medication for a few days to see how he does. And I may also consult an endocrinologist. My vet is good but Percy has never displayed any of the classic symptoms at any of the right times prior to or during his Cushing's treatment so I think maybe a specialist might be called for at this point. He is mostly normal, it's just very hard to know what is a result of the disease and what is a result of old age. He has started to age more rapidly over the past year and a half even outside of his Cushing's disease. Keeping in mind that he has always always been a dog that has drank water copiously with no associated health issues.

lily
06-17-2016, 07:46 AM
HI, so glad to see you on here. I am new, but have had so much info and encouragement here. So you are in the right place. I just wanted to add a few comments. Get the copy of the test results. They are yours. Also, my first question was how long would my Lily live with this? The vet said his oldest Cushings patient is 18. Lily is 7.

DoxieMama
06-17-2016, 08:46 AM
I think talking to the vet about withholding the Vetoryl is a good idea, given Percy's reluctance to eat, the occasional soft stool and those rather low stim results recently. How are his electrolytes?

lulusmom
06-17-2016, 10:33 AM
I think a consult with an internal medicine specialist is a very good idea. I highly recommend that you discontinue dosing until such time as your boy's appetite has returned to normal. Whenever either of my two cushdogs acted the least bit off, they were off of medication until they were normal in every way. The acth stimulation test were a bit low for comfort considering your pup has not been on the larger dose for very long. It is highly possible that cortisol will continue to drop which could very well be why Percy is not interested in food. To continue to dose him at this point, could land him in the ER.

I have to be perfectly honest here. The fact that your vet was not following proper protocol in monitoring treatment, he actually put Percy at risk for an overdose. I believe Renee mentioned this in one of her posts but I felt it worthy of repeating. Please see my yesterday's post to access the link to Dechra's treatment monitoring flow chart. In case you missed my post, you may have also missed Whiskey's Mom's post as well.

I went back and read your prior posts and now have questions about the diagnosis. You mentioned that imaging showed one enlarged adrenal gland and nodules on both glands and that a urine test confirmed cushing's. There is a urine test called the cortisol creatinine ratio that can rule out cushing's if the ratio is normal. If it is high, it is suggestive of cushing's but a vet should not confirm a diagnosis based solely on a high ratio, especially in an asymptomatic dog or even a dog with with symptoms. A low dose dexamethasone suppression (LDDS) test or an acth stimulation test should have been done to confirm the diagnosis. Were either one of these tests done? If not, that is even more reason to have Percy seen by a specialist.

Glynda

aallegre
06-17-2016, 05:33 PM
Percy has been on the higher dose for over a month.

His Cushing's was diagnosed at UPenn by specialists--he actually started in the oncology department with an abdominal ultrasound at my request because we thought it might be cancer.

Diagnostics were as follows (1 and 2 performed at UPenn):

1. Ultrasound
2. urine cortisol:creatinine ratio
3. low dose dexamethasone suppression test

I'm not questioning his diagnosis. It has been confirmed by multiple vets in multiple areas of specialty, including internal medicine.

My vet had his reasons for following the initial protocol, and has followed standard STIM protocol (per drug manufacturer) for the past 3 STIM tests.

He consulted extensively with the internal medicine docs at Penn when determining the nature of Percy's Cushing's (pituitary vs adrenal) and the initial dosing.

The test numbers are on the low side, but still within acceptable ranges for the medication--the literature for which states that individual results may vary outside of those ranges, and so long as the dog is clinically normal, this is basically okay.

I am being cautious, and I did not give Percy his medication this morning, but I will say again that his appetite was decreased before he was diagnosed (which is part of the reason we continued to try and figure out what was wrong with him) when typically, most Cushingoid dogs have an increase in appetite.

If I offer Percy a different KIND of food, he eats it immediately--so part of this may also just be my dog being picky.

His appetite may seem artificially 'normal' again if it is increased by the returning Cushing's symptoms, so that is not an ideal indicator, either--for there were times where he had increased appetite alternating with decreased, prior to diagnosis and after that, prior to stimming normally.

His stool may be a result of giving him canned food when his system has been digesting almost exclusively raw food for the past nearly two years. His stool when on raw is significantly firmer, normal in color and texture.

There are many factors at work here for Percy, but if his overall quality of life is improved when off of the medication, then it is definitely time to revisit and consult with a specialist again.

This is likely also a question for my vet/the specialist but depending on how long I keep him off of the medication, does he need to be worked back up to his dosage, or would I just start again where he was? (Or possibly back at the 120 only...). Then, if his next stim test was to be in 60 days, that would only be 60 days from the date I re-start the medication?

His potbelly is gone and his urination and drinking were much more normal since starting the medication, so I do think it was working for him, it may just be a question of finding a dose that needs to be compounded, rather than jumping up by 30mg each time.

I haven't heard back from my vet yet on his thoughts about stopping the meds, but so far, with no meds today, Percy is doing pretty well...thirstier, though.

This is the tough part--we know he has the disease, we know he needs some level of medication to be comfortable, but finding a level of medication that makes him more comfortable without adding other discomfort is the goal now.

I appreciate everyone's concern, and Percy does have a whole team of people working on his case. :)

lulusmom
06-17-2016, 06:00 PM
You know Percy best so if you think it's just him being picky with his food, then chances are that's what it is but the low stim test results increase my concerns that it could possibly be low cortisol. Withholding the Vetoryl is the right thing to do any time a dog is acting ill or not eating normally and Percy will not lose any ground by doing so. If you restart treatment at the same dose and the same thing happens, chances are you may have to decrease the dose. Vetoryl comes in 5 mg and 10 mg so you can tweak the dose in much smaller increments.

Glynda

aallegre
06-21-2016, 02:41 PM
Hey again, all!

Just wanted to say that I had Percy off of his medication for 3 days or so, and he was markedly uncomfortable. He splayed more (when he falls down and his legs go all four ways) and returned to having trouble going down the stairs, so it does seem that the weakness is disease-related. His panting was persistent and he just couldn't quite get comfortable. His appetite did increase, but in that ravenous, Cushing's way. He also started hacking more again.

I put him back on his medication yesterday and his stool has been perfectly normal, his appetite has been good, though I think part of his reluctance to eat is hiding the capsules in food, so I will have to deliver them a different way and leave his meals alone. Previously I gave them to him with peanut butter or goat cheese and he started to get wary of peanut butter but is definitely a cheesehound.

It seems that he is definitely worse without his meds, but I will monitor him closely for any signs of adrenal insufficiency and take him off again at the first hint of a problem.

His next stim test is in 60 days (which is great, because his insurance policy renews in August and will FINALLY start covering the condition again), but we will do one sooner if there are any worrying signs.

Thank you all for your thoughts and I'll update here if anything more comes up. He's a very quirky dog and has always been. It's possible that he's had some degree of Cushing's for some time now, but nothing significant enough to warrant testing, so perhaps it's just a new normal for him, now that he's being treated.

lulusmom
06-22-2016, 12:13 PM
Thank you for the update and sorry to hear that Percy has had his ups and downs since your last post. Have you decided against seeing an internal specialist? I truly think a consult would be a very good idea, especially considering the roller coaster effect of treatment and the highly irregular treatment protocol your vet was following until you requested otherwise. So far Percy has had three acth stimulation tests but only one of which seems to have been done according to protocol. The first one was was scary low, despite the fact that the test was done a day after dosing which is frightening because had the test been done 4 to 6 hours after dosing, I am fairly certain the results would have been too low to measure. By all rights, Percy should have been very ill. The second acth stimulation test result was questionable because you had some suspicion that he may have spit out the capsule that day which is why the results were so high in comparison to the first stim test. That leaves the last acth stimulation test as the only one that was conducted under optimum circumstances. That concerns me greatly because those stim test results are acceptable but quite low. You've already had to discontinue dosing since that stim test was done which makes me wonder if cortisol continued to drop. There are too many what ifs right now and because Percy cannot be considered stable on his current dose, I believe that waiting 60 days for another stim test is really not a good idea.

I have taken my dogs off of their medication more than a few times and while every dog may be different, none of the four dogs (two of my own and two shelter rescues) I've treated have ever had sudden and severe return of symptoms in the two to three days I withheld their medication. It seems that Percy has problems on and off of treatment which is why I think a consult with a specialist who can get Percy stabilized on an appropriate dosing regimen would be wonderful for both of you. There is a very good chance that Percy is a dog that will do much better on twice daily dosing. He is already on a huge dose and your mention of increasing to 180 mg at one point made the hair on my arms stand straight up. I didn't mention this before but there is a study that showed that bigger dogs may require smaller doses of trilostane to achieve effective control. I think we've seen that a number of times on this site which is why when I see big dogs started on big doses, I get nervous. Another concern I have is that Percy has a hacking cough. Whether he hacks on or off treatment, coughing is not a symptom of cushing's and I would suggest that you try to figure out what is triggering this. Here is an excerpt regarding symptoms from Chapter 10 - Canine Hyperadrenocorticism in the Fourth Edition Canine & Feline Endocrinology veterinary textbook written by Dr. Ellen N. Behrend:


Items of Importance Not in the History

Canine HAC is likely overdiagnosed due to the multitude of clinical signs and occurrence of false-positive results on screening tests. The primary indication for pursuing a diagnosis of HAC is the presence of one or more of the common clinical signs and physical examination findings (Behrend et al, 2013) Conversely, presence of clinica; signs not associated with HAC is a reason to not pursue testing. Vomiting, diarrhea, coughing, sneezing, pain, or bleeding is not caused by HAC. Poor appetite and seizures are uncommon and, if related to HAC, are due to the presence of a pituitary macroadenoma.

Dr. Behrend is a renown internal medicine specialist (endocrinologist) and the referenced textbook, or most likely an updated edition, is currently used in teaching hospitals in North America to educate up and coming veterinary internal medicine specialists. She is also a contributor to Dechra's continuing education program offered to veterinarians who want to learn more about the disease, dosing and treatment monitoring. I believe you were provided a link to that page earlier and I do hope you have read it and shared it with your vet. Honestly, had you continued to follow your vet's protocol, Percy could have easily been overdosed and landed in an er for several days on iv fluids. So major kudos to you for educating your vet and making certain that acth stimulation tests are now being done according to protocol. That's one concern that is alleviated but I still feel as though Percy is a long way from being stabilized and I am still very much concerned that the dose he is currently receiving may be too high for him. If Percy had had multiple stim tests under optimum conditions and the post stimulated cortisol was consistently in the mid two's, I wouldn't be as concerned. Both of my dogs stabilized rather quickly and post stimulated cortisol was consistently in the mid two's for the two years they were on the drug. I switched both back to Lysodren after two years with one having no resolution of hair loss and the other no resolution of PU/PD. I realize you are keeping a close eye on him for signs of low cortisol but sometimes dogs don't show us signs until they crash. One of my cushdogs had a pre and post stim of .8 ug/dL and he was acting perfectly fine. Had I continued to dose him, he most certainly would have become a critical emergency. This is why I personally would not wait 60 days for another stim test.

I do hope that a specialist is still in Percy's future.

Glynda

molly muffin
06-27-2016, 06:15 PM
My dog doesn't want to eat the same thing after about 3 days max. It can be very frustrating.

Poor boy. Some of these cases are not the easiest ones around and I swear they don't read the textbook for how they should react and what they should be doing.

Has joints and spine/disc been checked out too? (thinking of that back leg splaying when Not on cushings meds)