Papillon With Cushing's 2 1/2 years

[Lilypad]

Hi, I'm a new member and am struggling with taking my dog off trilostane and letting the disease run its course. I've spent $5000+ since diagnosis and am in debt over it. I've had my baby since birth and cry every day now over what to do. I'm a 74-year-old widow and am very sick myself. Hannah is almost 11 years old. Do I surrender her to someone that can afford to treat her or do I take her off the medicine and try to keep her comfortable to the end? How will it end? She's not stable on trilostane - she eats, then doesn't eat. One day she's perky and runs around and another day she trips and lays around all day. How long can she go without trilostane? What can I expect if I take her off the medicine? I welcome any information.

[Jonathan]

Others will come with better advice, I promise!
Im just here to tell you that you arent alone, and I understand the 'freakout' situation you are in.
- MY experience? The meds are not like an on/off switch.... meaning, the results/affects/doseage are more of a fine tuned thing.
- the goal is to keep an even keel... which is actually good, in some situations, money-wise. (there are times where your pup may need low doseage)
- my little girl went from as high as 60mg to 10mg if I remember correctly. (dont let the high cost of the beginnning 'suppression' get you flustered)
- disclaimer = Im looking at old boxes of meds I still have (a habit I formed as doseages changed over time)

[Kevin]

Sorry to hear about the challenges. Just throwing this out there-- have you explored different retail options for Vetoryl? Chewy seems considerably less expensive. And our Vet was initially charging us an exorbitant price for Vetoryl. We showed them the Chewy prices and they contacted the vendor and lowered the prices considerably. I think the 5=10mg got us down to $40-60/month or so. No clue what dosage you are using but just a thought. And we have a friend with a Cush Dog who found a Vet that will help financially strapped clients by managing Cushings symptoms without doing the constant testing(which is the big cost). They start out on small dosages and manage thru clinical signs.

Others will have more input I'm sure. Cushings can be very challenging and constantly throws us curveballs. We do the best we can and finances are a reality of it all.

[Joan2517]

Managing through just clinical signs can be dangerous. My Gable was peeing and drinking more and I almost raised his dose from 5mg a day to 10mg a day without testing. I decided to get him tested and his cortisol was so low that we had to stop the Vetoryl until his adrenal glands kicked back in. Turns out he was overstimulated on his thyroid medication, which caused the cortisol to drop too low. Testing is expensive, but necessary.

[Lilypad]

I have found an online pharmacy to get the best price on the trilostane so that is not the problem. The problem is the testing. I'm maxed out on my credit card and my income is just social security. I'm pretty much broke because of this. In 2 1/2 years we have not gone more than 3 mos without a test and this seems extreme. And my dog looks like shit inspite of the medication - big belly, terrible hair loss and now she is tripping on even a small step. Is it my Vet that doesn't know what she's doing or is it my dog's problem? I want to hear from people that have chosen not to medicate so I can be prepared. I'm 74 & not healthy & my gut is telling me to let go emotionally. I'd like to hear from other people that have reached this point.

[labblab]

Hello and welcome from me, too! I’m so glad that Jonathan, Kevin and Joan have already stopped by to share their thoughts and suggestions. For sure, I understand what a financial burden Cushing’s treatment can be. There may still be a few additional suggestions that might help in terms of cost. For instance, monitoring testing every three months is indeed the protocol that is recommended by the manufacturer of Vetoryl as well as clinicians who specialize in Cushing’s treatment. However, if your vet is performing ACTH stimulation tests every time, it’s possible she’d consider shifting to a less expensive method of monitoring that involves testing only the baseline cortisol level immediately prior to receiving the daily dose of Vetoryl on the day of the test. So that’s one example that we can talk more about later if you’re interested, since in terms of cost, it would fall between no testing at all vs. expensive ACTH testing.

But backing up a few steps, there are a few questions I need to ask you before I try to make many more suggestions. Can you tell us what symptoms and testing led to Hannah’s original Cushing’s diagnosis? Also, can you find out and give us the exact numbers for at least her most recent monitoring tests? If Hannah is not responding positively to the Vetoryl, our first two worries would be that perhaps Cushing’s is not the correct diagnosis, or if so, that she’s not taking the correct dose of the medication. Specifics about her testing and monitoring history can help clarify those questions.

While we await that info, I can offer out a few general thoughts. First and foremost, you’re wondering what will happen if you decide to stop treatment. In the short run, probably not a whole lot except for a rebound or worsening of the symptoms that led you to treat in the first place. Cushing’s is typically a slowly advancing disease. Most people start treating because of obvious overt symptoms such as excessive thirst/urination/hunger, panting, lethargy, fur loss, etc. Over time, however, systemic internal changes can also take place leading to one or more of the following: high blood pressure, kidney problems, vulnerability to infection and developing blood clots, increasing blood glucose levels, serious skin problems, etc. For younger dogs, I especially encourage treatment in order to slow the development and progression of one or more these more serious problems over time. For older dogs, I worry less about these slow chronic problems and more about immediate quality of life. I’d personally be prioritizing observable symptom relief for older dogs. And if the observable symptoms weren’t that troublesome for the older dog, I might not treat at all.

Under the right circumstances, I would hope that Hannah would still have several years ahead of her. But I also don’t know her history and whether she’s a “young” 11 or an “old” 11. As her mom, you know best how bothersome her symptoms have been, and remain even now under treatment. If we discover from her monitoring tests that her cortisol level has indeed been held within the therapeutic level but her symptoms remain, then we’ll all be scratching our heads. And in that situation, I really couldn’t argue with stopping the Vetoryl, at least temporarily, to see whether or not things worsen any further. Perhaps they wouldn’t.

OK, I’ll go ahead and close for now. But as I say, it’ll help us a lot if you can fill in some of the blanks about Hannah’s diagnosis and monitoring. Thanks in advance!

Marianne

[Lilypad]

I don't know what the exact cortisol numbers were this last time we tested; they were high but not bad the Vet said. Her numbers had stayed normal for a long time but she began to look depressed all the time, stopped eating, and lost weight. We had been increasing the dosage up to 20mg twice a day until she lost her appetite & weight. We dropped it down to 10 mg once a day and she ate better but did not regain the weight. She weighs 9.4 down from 10.4 when all this started. It started 3 mos after she had emergency stomach surgery for something she ate. When they did the surgery they messed up and didn't close the stomach well enough and had to go back in the next day and repair it. At the same time, they nicked her spleen and had to take it out. That was the local Pet Emergency Hospital and I should have sued them now looking back. She was beautiful and a very very young 11 year old. So the 20mg twice a day kept the numbers normal but was creating more & more side effects. It's just been recently that we dropped it to 10mg once a day and she became weaker, lost appetite, tripped more, and began to shake. So, it just seems like the side effects are there no matter the dose. She's had issues with liver enzymes, potassium & creatinine going up & down. She's never had diarrhea or vomiting. I haven't really made a mental note of what went out of wack with each trilostane dosage change because I figured the Vet knew what to do. She has had frequent ear infections but not chronic. She does have a heart murmur that went away when she went on trilostane. Her breathing sounds very labored to me. These issues were with us before cushings. I'm exhausted and feel like we're on a roller coaster not really making any headway. I feel like I need to let her go to someone that can pay for her care. But then I think she would be traumatized to be without me. Lately, there are many times when she won't take her medicine even though it's a flavored chew. I really struggle to get it into her a lots of times waste the pill trying.

[labblab]

Thanks so much for your quick reply, especially knowing how stressed out you must be feeling right now!! I very much appreciate this new info, but I apologize that I still have some remaining questions. I’m still not clear as to what her original symptoms were that led your vet to test for Cushing’s. Why did the vet think she had Cushing’s in the first place? And what was the timing compared to all the emergency surgery that she had? Since you’re not mentioning any of the most typical outward symptoms of Cushing’s, I’m still wondering about the accuracy of the original diagnosis.

Also, that’s quite a huge jump up-and-down in Vetoryl dosage. For a dog of Hannah’s weight, 40 mg. daily would be a *really* big dose!! And she may not even be able to handle the 10 mg. right now. She might actually *benefit* from a break from the Vetoryl altogether right now. It would help us so much if you could ask your vet to send you printed copies of all the monitoring test results, because that’s really what we need to know in order to determine whether or not she’s been overdosed or underdosed. Hannah would not feel well either way. Overdosing is much more serious, but if she is being underdosed, the medication won’t help control her symptoms. After paying for her tests, you’re entitled to printed copies of them all and your vet should provide them without any argument.

However, if you’ve got health problems of your own, I do understand that Hannah’s issues — including contacting the vet about the testing — just may feel like too much for you to try to cope with right now. I’m going to contact one of our staffers who’s had years of active involvement with rescue and foster groups. I’m hoping she may be able to offer you some guidance as to whether or not there may be some foster help for you and Hannah under these circumstances. It may be a day or two before she can join us, though, so in the meantime, I’d still really appreciate learning more about the reasons why Hannah was originally tested for Cushing’s. Thanks again for the info.

Marianne

P.S. I apologize for calling Hannah “Lily” in my posts — I’ve just now gone back to correct that and hopefully I caught all my errors!

[Kevin]

I agree 100%, Joan, that not testing isn't ideal.

[labblab]

Hi all, I’m in kind of a reflective mood this morning, so decided to add these additional general thoughts of my own. Even though they’re not specific to Hannah, this seems like the right place to put them. Joan and Kevin, I think you *both* have good points to be made. Everybody keep in mind that I’m not a vet and the following are just my personal musings. But over the nearly twenty years now that trilostane has been used to treat canine Cushing’s, it frustrates me enormously that no truly ideal mode of monitoring testing has emerged.

For a long time, the ACTH was considered to be the gold standard, and probably still is by many clinicians. However, it’s always been recognized that there can be a definite disconnect between ACTH numerical results and the actual clinical picture that a dog presents. The numbers can look good, but the dog may not be looking so good him/herself. In recent years, the pre-pill baseline cortisol test has been advanced as a less expensive and perhaps even more accurate gauge of trilostane effect. However, I think it has shown its limitations, as well. Meaning that once again, the test results and the physical appearance/wellness of the dog may be inconsistent at times and the *best* method to monitor trilostane remains a big question mark.

I am not knowledgeable enough to understand how or why either form of cortisol testing may be missing the mark. Regardless, I totally agree with Joan that, imperfect as the testing may be, whenever possible it is much safer to test via one or the other method rather than to forgo testing altogether. However, since the testing isn’t perfect, we also need to be vigilant about using our eyes and our guts when it comes to our dogs. And — this is where Kevin comes in — I agree that there may be instances where an owner may opt to give trilostane a try even if testing isn’t an option. We all agree that isn’t ideal. But I might have found myself in exactly that situation myself, out of desperation to help my dog. He was so incapacitated by his Cushing’s symptoms that he had virtually no quality of life left. If the choice had been between euthanasia or giving unmonitored trilostane a try, I would have chosen the latter. Back in 2003 when he was treated, trilostane was not FDA approved nor available for purchase in the U.S. So I ended up importing the human version of the medication from the U.K. and my dog became the first trilostane patient for my specialist. People here who are familiar with my Barkis’ story know that things didn’t end up as we had wished. We were lucky that we could pay for all the monitoring testing. But still, he was an example of a misfit between the monitoring test results (which were good) and the clinical results (which ended up being not so good). Our assumption remains that his decline was due to an expanding pituitary Macroadenoma and not due to ill effects from over-medication. But I’ll truly never know for sure.

What I do know is that treating him with the trilostane seemed to be our best hope at the time, and I nearly broke my leg running to the mailbox to claim his first shipment when it arrived from England. Had I not been able to afford the testing, I would have shouldered the risk of starting at a low dose even without the benefit of testing. That’s how uncomfortable he was. I would have shouldered that risk. Definitely not ideal, but sometimes you gotta do what you gotta do.

So those are my thoughts for today, probably worth little more than two cents! But there you have it. And God bless all our babies who bravely struggle each day to conquer this disease…

Marianne