Desperate for Help

[Karen1]

I'm new to K9 Cushings but not new to the disease. My beagle/dachshund mix is almost 10 now but was diagnosed with Cushings 5 or 6 years ago. At first we started on a homeopathic route, treating her with melatonin and flax capsules. We saw no improvement in her symptoms (Excessive thirst, urinating in the house). Next, we tried trilostane but when we tried to increase her dosage, she crashed with severe lethargy to the point of almost being comatose. Prednisone brought her out of it. Our vet then recommended we take her to an internist. He advised against the trilostane saying because it's not pure, the dosage varies by capsule so he started her on Vetoryl 10 mg in the morning and another 10 mg at night. We have gradually been able to increase her Vetoryl to 30 mg in the morning and 20 mg at night (with only 1 crash requiring Prednisone). She is tolerating this dose right now but all through this, we have not seen any improvement in her symptoms at all. In fact, her symptoms are getting much worse. We take away her water by about 8:00 and she sleeps in her crate at night. During the day, she is taken outside every 1 1/2 to 2 hours but still, she pees in her crate at night and wears doggy pants with a pad inside which she soaks frequently even though she goes out often. Her medication is pushing $200 month. Every time she has to go for a stim test, that costs $400. I have talked to the vet about Lysodren but have heard such horrible things about it. She also has tremors in her back legs which are getting worse although she can walk and doesn't fall. The cost and the peeing everywhere is pushing me to my end and I am considering euthanasia although my sons are pleading with me not to do that. I really love the dog but am at my wits end. Does anyone have any suggestions? I can't do this much longer.

[ShibaMom]

Hi Karen!

Welcome to the forum, although I'm sorry that you need to be here.
It sounds like you have quite a lot you're dealing with there. *hugs*

I've only been on here about a month (so very thankful for this wonderful community!), but wanted to welcome you.

Someone more experienced will be here shortly with some questions, but in the meantime, could you please post results from any recent bloodwork and urinalysis?
ACTH Stim results, along with their reference ranges for the lab, they only need abnormal results. Have they checked for any kidney or nerve issues? (When I hear lots of peeing, it does make me also think of kidneys, and the back leg tremors could be a variety of things).

How much does she weigh?

Your pup is obviously very lucky to have you and your family, as she is clearly in wonderful hands and well-loved. Lucky girl!!

I look forward to hearing more about her.

Regards,
Samantha

[MurphysMommy]

Isn't Vetoryl the same thing as Trilostane? On the box of capsules I have, it says Vetoryl and in parentheses it says, "Trilostane"…. I'm new to this disease so am still learning… This is a great forum, Karen. I'm sorry to hear about your sweet little doggie...

[ShibaMom]

Isn't Vetoryl the same thing as Trilostane? On the box of capsules I have, it says Vetoryl and in parentheses it says, "Trilostane"…. I'm new to this disease so am still learning… This is a great forum, Karen. I'm sorry to hear about your sweet little doggie...

Vetoryl is the brand name drug, whose active component is trilostane.

When someone gets "trilostane" which is non-brand, it's made at a compounding pharmacy, which is not super regulated.

As you may know, generic drugs, while regulated by the FDA, are allowed certain variances in the amount of the active ingredient, as well as the efficacy. There may be differences between batches, or between pharmacies.

Compounding pharmacies have much less oversight, and the drugs aren't tested the way generic drugs are. Thus, there can be a wide range of active ingredient in the pills.

It's important, if using compounded trilostane, to use a reputable compounding pharmacy, to help minimize the amount of variance, as well as have higher quality controls and purity of ingredients.

Diamondback is one of the well-known and reputable pharmacies. Other members can offer other names.

My Zanya was originally started on trilostane from Wedgewood Pharmacy (via my vet), but it was brought to my attention that they have numerous FDA citations, and after researching, decided to go with Diamondback next.

Hope that wasn't too long-winded!

Cheers,
Samantha

[mytil]

Hi and welcome, I am sorry your and your girl are having these problems.

I have just a sec but wanted to ask also how much does she weigh? Right now she is taking 50 mgs and you are seeing no improvements --- how long has she been on Vetoryl? What other symptoms have not decreased (excess hunger, thinning of the coat etc)?

Also has a urinary tract infection been ruled out of which can cause some of the urination problems at this point.

It is important the prescribing vet has experience in administrating these powerful drugs both Lysodren and Vetoryl/Trilostane.

Shaking is a sometimes associate symptom of Vetoryl/Trilostane or the cortisol levels have fallen too low again. What was the result of her last monitoring ACTH test?

I am sorry for all the questions, but the more we know the better we can help you both.

Keep us posted
Terry

[labblab]

Welcome from me, too! Is your dog still under the care of the internist? If so, what does he have to say about the worsening problems? I am puzzled that he would continue along the same treatment path if things are getting worse instead of better.

As the others have said, we really need to know the actual numbers for any monitoring ACTH tests that have been done since starting both the compounded trilostane and the brandname Vetoryl. This is the only way we can help judge whether the drug dose is either too high or too low. If the cortisol levels are indeed being kept within the desired therapeutic range but you are seeing worsening in the thirst/urination, I'd have to wonder whether something entirely different may be contributing to that problem.

Can you tell us how the Cushing's was originally diagnosed? Were the ongoing thirst/urination the only symptoms? What diagnostic tests were performed? From what you are, describing, I am worried that Cushing's may not be the culprit at all and your dog may be overmedicated for a disease she may not have. As mentioned above, there may be primary liver or kidney issues at play, for instance. So any and all test results you can share with us are much appreciated.

Thanks in advance for this additional info,
Marianne

[Wrighton]

Good Morning.
I am very new to Cushings. However, is it possible that DES might help the urination? It ended our dog's leaking. Please don't trust my recommendation. I just put it out there in case it might help. My vet and intern specialist say to continue if it works, and it does. For cushings we have just started melatonin and lignans. It's too early to see if it brings down levels, but no leaks in now 31 days.

Maybe some more knowledgeable could comment.

Gail

[Squirt's Mom]

Just want to add that you must NEVER withhold water from a cush pup. They do not pee a lot because they drink a lot - it is the exact opposite. A cush pup is going to pee whether they drink or not so they must drink to stay hydrated. Never, ever withhold water from a cush pup. They can become dehydrated quickly via urination. ;)

[lalosmom]

I am new as well and greatly appreciate finding this group. There has already been some very helpful information about obtaining meds, about which I was clueless with my other Cushing's dog 13 years ago.

This is just my observation, but I want to put it out there because you said you were considering Lysodren....my other dog was on it for about 2 years, which I suppose is the good news that it did work for that long, but it ended with a completely exhausted, immobile dog at which point we had to start giving him cortisone just to get his head off the floor and to make him eat something.

I also agree that water should not be withheld.