Any last chance options other than trilostane for pdh?

[Daisydog]

We've had a long history over the last year with my 12 yo mixed breed female. Due to the pu/pd exercise intolerance and leaking... her results from acth stims were never 100% cushings... we tried trilostane for four months... she gradually lost weight, muscle and began to show toxic signs, muscle weakness and tremor.
It got so severe and dose changes wouldn't help, she was headpressing and confused with 10mg/day so eventually we decided to stop... a little while later we tried again, (the toxic symptoms disappated soon after discontinuing... but started straight away again, this time more acute).
She had ultrasound and specialist investigations which indicated cushings pituitary... but we couldn't keep her on trilo... it didn't help her and she wasn't a dog any more... didn't recognise anyone and couldn't get up... just lay down sleep like and shook the whole time.
We decided (with the vet) that she couldnt tolerate trilostane, especially with her arthritis) so treated her as best we could symptomatically... gradually she has continued to decline since we first suspected cushings.
She has wasted away and developed calcinosis cutis.... her digestion is very sensitive and she is very weak.
We know she can't take trilo... and worry mitotane would cause the same symptoms but be less reversible...
We're desperate for any last hope or to try anything else... she cant go on walks anymore and reducing quality of life rapidly..
We've tried multiple vets and can't say goodbye without knowing we have tried everything.... even though it seems in vain...
Thanks for any help..

[labblab]

Hello and welcome to you and Daisy, although I am so very sorry for the problems that have brought you to us. I wish I could offer out a great treatment alternative to you, but I'm afraid I cannot. As you already know, trilostane and mitotane are the two drugs that are known to be successful in lowering the elevated cortisol associated with Cushing's. The anti-fungal drug, ketoconazole, also lowers cortisol, but it can be very hard on the liver and I do not believe it would likely be recommended for treatment in a dog as compromised as Daisy.

I can certainly imagine your desperation in hoping to find a solution, and my heart goes out to you. But from what you are describing, I do think that loving, supportive care may be the best gift you are able to offer Daisy from this point onward. Even if that is the case, we invite you to remain with our family here so as to receive support for yourself, as well. So many of us have had to walk down a similar road with ailing loved ones, and I do believe the journey is made a little bit easier when you have friends walking alongside you.

Sending big hugs to sweet Daisy,
Marianne

[Squirt's Mom]

Hi and welcome to you and your baby girl! :)

I am so sorry for what your baby has been thru. :( Let's start at the beginning, ok?

What prompted the testing for Cushing's in the first place?

What signs were you seeing?

What tests were done to diagnose Cushing's?

Would you mind getting those test results, the actual numbers, and posting them here for us? That will help us help you a great deal. ;)

How much does she weigh?

Was this 10mg the brand name Vetoryl?
Was it compounded into a liquid form or other form different from the pill made by the manufacturer? ie was it the brand name as it came from the manufacturer or was it altered in any way?

Studies have shown that Vetoryl (Trilostane) will cause a pituitary tumor to grow that is inclined to do so. Most tumors in PDH remain microscopic but some grow into what is called a macroadenoma, or macro for short. Trilo helps this process of growth along sadly. I don't know of any studies that prove Lysodren also helps pituitary tumors grow but logic says it will do the same. The signs you described of head pressing indicate a brain tumor larger than the microscopic tumors usually seen. The excess cortisol in their little bodies acts as an anti-inflammatory on the brain tumor just as it does on arthritis, allergies, and other inflammatory conditions.

The ONLY thing that will get the CC under control is to get the cortisol back to a normal range. The ONLY way to get the cortisol back in range is with either Trilostane (Vetoryl) or Lysodren. I want to help you lose some of your fear about Lyso - it is the oldest drug used to treat this disease while Vetoryl (Trilostane) is the new kid on the block and we are still learning what it does and how to use it. BOTH have the exact same risk factors up to and including death. But BOTH are life-saving drugs when used correctly. Some pups simply cannot handle one while they do just fine on the other. My personal choice is Lysodren over Vetoryl...and I didn't start out feeling that way when my baby and I first started this journey. But the more I watched and learned, the more comfortable I felt with Lyso and that has not changed over 8 years. In your shoes, based on what you have shared with us so far, Lysodren is the only hope your baby has left IF this is Cushing's and not something else.

Lyso is hard on the digestive system but using Pepcid AC can help when given just before the meal and med. However, even with the Pepcid AC (it MUST be the AC form and no other) some pups cannot handle the Lyso. But this is your only choice I can think of based on the info we have. Hopefully someone else may have some ideas to offer.

Meanwhile gather those test results and let us know all you can about your baby girl's medical history. We love details so don't worry about long posts. ;)

I'm glad you are here. We will be with you every step of the way - you and your baby girl are family now.
Hugs,
Leslie and the gang

[mytil]

I am so very sorry your girl has had these problems, it is heartbreaking to see them decline like this when treatment starts. Yes some dogs are overly sensitive and/or cannot take Trilostane at all.

I wish I could offer more definite answers on any additional traditional treatment options other than Trilostane or Lysodren (Mitotane). And BTW, I am not sure what your vet means by not tolerating Trilostane because of our arthritis or that the ACTH was did not 100% diagnose Cushings because of the pu/pd exercise intolerance and leaking.

Giving these meds to a dog that does not have Cushing's can be extremely dangerous and life threatening. When was the last ACTH test performed (please post the results here).

There are alternatives that can help with the outward symptoms such as some holistic options.

There are several here that are more familiar than I am and will be stopping by soon.

Please keep us posted.
Terry