Declining need for Trilostane over time?

[Carin]

Hi, Temporary Forumites,

Duncan, my 14-year-old Cocker, has been on trilostane since he was diagnosed with PDH 27 months ago. He originally started on 60 mg once a day, to which he responded immediately and well. Over the 2+ years since then, in response to regular stim testing, we've reduced his dose till now he's getting only 2 mg twice a day (i.e. 4mg a day total)! He went through a period last summer of gastro-intestinal problems that resulted in severe weight loss, despite having a pretty good appetite, but that seems to have leveled off - he's now about 22 lbs, down from his mature high weight of about 26 lbs and up from his low of last summer of 19 lbs. Apart from that period of weight loss, his energy, appetite, and quality of life have been great. Despite stims that keep trending lower, he's shown no signs of an Addisonian crash. So I'm writing not out of concern, but out of curiousity: have any of you experienced a similar reduction in the need for meds over the course of long-term trilostane treatment? I wonder if we're heading towards a time when he won't need the trilo anymore.

Thanks,

Carin

[ventilate]

Re: Declining need for Trilostane over time?

Carin;
I dont use trilostane but use lysodren. My experience is sort of the same. Nike had been on lyso for a year and half, stable as a rock in fact I had to do a couple miniloads (for us it was a couple extra doses in a week) to take her down a bit as she continued to creap up. a year and half ago I did a miniload and she went a bit low, it was under 1, but she had been there before when we loaded and when the IMS took her there for specific reasons, she shows no signs of overloading either. Anyway I held her lyso for a couple weeks, as I had before when she was to low then had her stimed again and it showed her even lower so she was off from sept till Dec then stimed again and she had come up so started her on lyso at half her previous dose. I have been treating her by her signs and symptoms since as she is a very geriatric giant schnauzer at 12 and half years old. I had given her very few treatments in the last year and had her stimed in Feb and her levels were <0.2 again not symptoms SO she is now on a lysodren holiday and I will have her stimed again in June.
I have seen where others have had to drop the trilo for the same reasons you have had to, I dont know that it is common but I can recall a few here that have done that.

Sharon

[Spiceysmum]

Re: Declining need for Trilostane over time?

Hi Carin,

Spicey has been off Trilostane for 6 months now. She also started with ACTH test numbers that were always on the high side but over the 18 months she was on it they gradually got lower even though she stayed on the same dose throughout. Her last result in October was less than 1 so we decided to take a weeks break then start back on a lower dose. None of her cushings symptoms returned in that week so we decided to hold off until they did. Six months later she still has no cushings symptoms. Spicey didn't show any signs of being that low so if it wasn't for the tests we would not have known. I still find it strange that she was as well when her number was that low as she is now. I know we will have to have another test at some time to see what her number is now but wouldn't treat her anyway unless she had some symptoms back. How low were Duncan's last ACTH results?

Linda and Spicey

[Patricia ann Wh]

Re: Declining need for Trilostane over time?

The more I'm reading about tilostane dosing - the more complex is gets.
I read yesterday about a pony - over 400 lbs - on 125 mg. a day for 2 years and showing no signs of cushings.
It sounds like the dosing should always start out very very low, for safety reasons and because the low low dose just might be all that is needed, considering its a dangerous drug - why go and look for trouble.
I'm glad your guy is on such a small does - is that right - 4 mg. a day.???
Excellent.

[Carin]

Re: Declining need for Trilostane over time?

Sharon and Linda, that's very helpful to know. Linda, Dunc's recent stims were as follows:

From mid-late 2008, when he was on 20mg/day, in two doses:
5/27/08 pre 1.3, post 2.2
8/28/08 pre 1.57, post 4.1
12/9/08 pre 1.1, post 2.54

Since he was trending low on the pre- results and his red blood count and globulin were a little low on the December test, the vet cut him back to 10mg/day, in two doses, and retested:

2/6/09 pre 0.6, post 2.47, at which point we switched to a single 5mg/day dose, which brought the "post" up, but not the "pre":
3/6/09 pre 0.619, post 4.01

After which we switched to 4mg/day in two doses. My vet was happy with the "post" at the 3/6 stim, but thought the low "pre" might reflect the fact that Dunc was getting his whole dose in the morning. (I was really suprised at how low these last tests were, because Dunc had been SO energetic and apparently well - probably better than he had felt a year or two ago.) We'll retest in a couple of weeks and see how the 4mg split dose is working, but it does look like we might be trending towards being ready for a trilo vacation.

Carin

[Carin]

Re: Declining need for Trilostane over time?

Hi Patricia Ann - sorry I missed your post while I was replying to Linda. Yes, Duncan's currently on 4mg/day. My vet echoes your thoughts: even though he started Duncan on 60mg/day back in early 2007, his experience with several clients means he wouldn't do that today. I feel so lucky to have a vet who's actively keeping up on the research. Early in his treatment of Dunc, my vet actually called me from a veterinary conference to report on the paper he had just heard about twice-a-day dosing.

[Patricia ann Wh]

Re: Declining need for Trilostane over time?

Hi Carin,
Thats amazing - how much does Duncan weigh??
Its wonderful.
You are extremely lucky to have a great - intelligent vet.
So your vet would start all dogs out on very low doses??

[Carin]

Re: Declining need for Trilostane over time?

He weighs about 22 lbs.

Yes, my vet has been saying he can hardly believe he started Duncan on such a high dose, though we haven't discussed specifically what he's doing for newly-diagnosed clients. (This is Brian Collins at Colonial Vet in Ithaca, btw, if anybody needs a fabulous vet.)

[Patricia ann Wh]

Re: Declining need for Trilostane over time?

Carin ---

Do these numbers mean anything to you from the 1 hour acth test.

Cortisol Pre 5.9
Cortisol 2 26.7

Patti

[Roxee'sDad]

Re: Declining need for Trilostane over time?

Carin ---

Do these numbers mean anything to you from the 1 hour acth test.

Cortisol Pre 5.9
Cortisol 2 26.7

Patti

Hi Patti,
These numbers seem to suggest cushings as the post is high but have seen much, much worse. But it does not neccesarily suggest what type of cushings.
John (Roxee's Dad)

[Carin]

Re: Declining need for Trilostane over time?

Patti - others here will be much more informed about interpreting test results than I am, but my understanding is that the goal is to get the second result in the range of 1.45-5.4, so that result is very high. The flow chart in the Vetoryl pdf in the forum's files makes things fairly clear: http://www.dechra-us.com/File/vetory..._Flowchart.pdf

Carin

[frijole]

Re: Declining need for Trilostane over time?

Hi Carin. You are right that those numbers are high because Jesse hasn't started treatment and is still being diagnosed. "Normal" dogs cortisol levels are 22 or below so that number is high but not "way high". The 1 to 5 numbers that we talk about are the goals for decreasing cortisol in cush dogs.

Cush dogs need way lower cortisol levels than others dogs since their poor bodies want to keep producing it. Hope this makes sense. Kim

[Carin]

Re: Declining need for Trilostane over time?

Hi Kim. I replied to Patti's question on this thread without catching up on Patti and Jesse's story in their own thread. Going over to read that now...

Carin

[Patricia ann Wh]

Re: Declining need for Trilostane over time?

Hi,

So should the lower number be from 1 - 5 ??

I'm sorry I looked at that flow chart, and I'm confused, I'll look at it again.

Oh My Lord, I can't believe you guys understand all of this.

Two vets said (no three) that they would start Jesse on low dose trilostane. (Not that any of them have used it) Oh BOY

Thank you all

[Lulusmom]

Re: Declining need for Trilostane over time?

To answer Patti's question, the basal or pre draw number is of little value when interpreting the acth stim test for monitoring of treatment. The normal resting or basal range is usually 1 to 6 (depending on the lab) and anything above that can usually be attributed to the stress of being at the vet's office. It is the post draw that you want to be within the 1 to 5 range, ideally anywhere between 1.5 to 4.5.

Glynda