Jesse just diagnosed with Cushings

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi,

I've been waiting - many many delays, I only have a moment here.
Peterson called one of the vets - he said Peterson said - Jesse should be on 90 milligrams of trilostane once a day.
Once a day???
http://www.flowertownanimalhospital.com/trilostane.html

I would love to hear the responses.
Glynda, Kim , Cheryl
Talk to me.

Patti and Jesse

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Oh - One more thing - in case I didn't mention it - Jesse is 88 lbs.
I swear - mostly belly.
I don't know - Peterson is the "expert" . Also, Dechra spokesman.
The 2 times a day dosing just makes more sense to me.

Patti

[labblab]

Re: Jesse just diagnosed with Cushings

Hi Patti,

The once vs. twice daily dosing question is one that has a lot of us scratching our heads around here. I don't know whether you've had a chance yet to read the referenced dosing and monitoring guidelines on our "Trilostane/Vetoryl Information and Resources" thread. If not, you'll definitely want to take a look:

http://www.k9diabetes.com/forum/showthread.php?t=745

Even though we are aware of research studies over the last few years that advocate twice daily dosing, as far as we know, both Dechra and also UC Davis still recommend first starting with once daily dosing, and then advancing to twice daily dosing only in the event that symptom patterns and/or test results indicate that it is advisable. We know that the Dechra info is current. We are not so sure as to the current recommendations of UC Davis (the journal article on our "Information" thread dates from 2007).

Fortunately, another member here is currently in contact with a vet at UC Davis, and she has agreed to ask him whether they have updated guidelines available for us to see:

http://www.k9diabetes.com/forum/showthread.php?t=847

So stay tuned, and perhaps we'll have more info available shortly.

Marianne

P.S. Given Jesse's weight, 90 mg. is a conservative starting dose according to Dechra's guidelines, so that part sounds good to me.

[Squirt's Mom]

Re: Jesse just diagnosed with Cushings

Hi Patti,

That is a low starting dose, but that may be the best approach for Jesse after what he has been through. UC-Davis recommends starting at 3mg/kg so this is closer to their recommendation than Dechra's. I wouldn't worry over much about the low dose...probably a good thing. Trilo is easy to adjust and it's better to start low and tweek up as needed than risk a crash by starting with too much.

Jesse will tell you if he needs to be on twice a day dosing. You will notice that the signs seem to start coming back in the afternoon/evenings if he does need the dose split. We usually advocate twice a day dosing as this is what the studies we have read say and what we have seen in several pups. But we have also seen pups that do well on the once a day dosing. Each pup is unique so just watch Jesse and you will notice if the med seems to be losing its effectiveness later in the day.

Dr Peterson is so well respected, it would be hard for me to question his recommendations or go against them; same way I feel about Dr Oliver at UTK. Give his plan a little time and see how Jesse responds. The good thing about Trilo is its short life...it leaves the body much quicker than Lysodren.

You're a good mom who watches her baby like a hawk so I know you will do just fine with this plan. Of course, we are here if you need us!

Hugs,
Leslie and the girls

[frijole]

Re: Jesse just diagnosed with Cushings

Heh Patti - I agree with the others that a lower dose is better to start with trilo. You monitor Jesse closely and you certainly will and you let us and the vet know if you see anything going on. When in doubt, withhold the drug. It quickly leave the system. Hang in there. Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Lesley,
I've been meaning to ask this for a long time now.
Does anyone else notice the symptoms, water intake, panting, hunger, all are exasperated in the p.m. Why is that???

"Jesse will tell you if he needs to be on twice a day dosing. You will notice that the signs seem to start coming back in the afternoon/evenings if he does need the dose split."

Thank you all, I'll be watching

Do you think I should have prednisone on hand??

As far as split dosing, do most people do - say 7 am - 7 pm??

[frijole]

Re: Jesse just diagnosed with Cushings

Patti - Yes you MUST have prednisone on hand. No doubt about that. If you don't have any on hand do NOT give the first dose until you do. Call the vet to get it. I would also be sure the next time you speak with Peterson's office that you let them know that your vet failed to give you prednisone and so Peterson needs to be VERY SPECIFIC when he gives instructions to your vet and not assume he knows protocol.

Re the exact time of dosing, I believe most here indicated they do it at a time convenient for them - usually after the meal so they can withold it if necessary. Kim

[labblab]

Re: Jesse just diagnosed with Cushings

Patti,

If you are going to use a twice daily dosing schedule, then you are right that from a timing standpoint, once every twelve hours is ideal. However, trilostane should always be given with food so that it is absorbed properly. So Jesse's feeding schedule may influence your exact timing.

Also, although I'm sure you would do this anyway, you really need to discuss dosing options with Dr. Peterson before making any change to twice daily dosing on your own. As I said earlier, even though we are aware of several research studies advocating the advantages of twice daily dosing, the only two formal clinical protocols with which we are familiar still recommend starting out first with one dose a day (although we're awaiting current info from UC Davis). Once a therapeutic ACTH level is achieved on the once daily dose, then the dog is monitored for a return of symptoms later in the day. Also, a UC:CR test performed on a urine sample obtained in the morning prior to trilostane dosing can also help indicate whether the once daily dose is adequate, or whether a shift to twice daily dosing is advised.

I feel confident that Dr. Peterson is very familiar with both the current research and current clinical practice. So I would encourage you to discuss the relative merits of once vs. twice daily dosing with him directly to find out the basis for his recommendations.

Marianne

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Kim,

I did ask the vet and he said I DO NOT need prednisone - he was really adamant. I was too - after everything I've read from cush mom's and dad's,
I knew what I had read. I'm calling him back.

Thanks Kim

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi Marianne,

So is that the reason for starting trilostane once a day??
If his symptoms are worse at night (always have been) would the dose be given - when??
If I give it at 7 am - and it wears off by the pm - oh - I'm confused.
He always at his worst at night anyway.
My vet (I'm not his biggest fan) is unavailable till after noon time today.
He is the one talking with Peterson, I guess I'm not in the conversations ( I was told from the get go - I would be)
No you're right I have to go along with Peterson - who am I to argue.
I guess the twice a day just makes more sense to me.
Everyone says it short acting.
One of the other vets I talked to told me he went to a lecture at Tufts recently and they also recommended twice a day dosing.
Once again - I can't argue with the world renown expert.
And yes, of course, he must be very familiar with the very latest findings and research on trilostane by ALL sources.
It WOULD be nice if I could talk to him, I know Jesse better than anyone.

Thank you very much Marianne

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Hi- One more thing here.

I know my story is complicated because of the vets involved here.

NOT ONE OF THEM HAS USED TRILOSTANE, thats why so many got involved - they are anxious to try it though, and Jesse is first in line. Guinae Pig ?????

But - Peterson has not seen my dog, and the vet that he is working with has NOT seen my dog since last AUGUST for a UTI - that was when Jesse was at his best - perfect. It really seems that Dr. Peterson should have some questions for me that can only be answered by me. I hope the once a day isn't too much at once for Jesse - he is a senior.
Here I go - questioning again.
I'm just trying to avoid Jesse having a set back and then waiting to start all over again.

Am I worried - or what.

Patti

[labblab]

Re: Jesse just diagnosed with Cushings

It really seems that Dr. Peterson should have some questions for me that can only be answered by me.
Patti

Patti, I agree with you totally! And I thoroughly apologize if my earlier reply made you think I was being critical of your questions about all this. I don't think you should blindly follow ANYONE'S advice (world-renowned or not) if you have questions or worries about what they are telling you. What I meant was that I hope you'll really press hard to talk directly to Peterson yourself in order to have your questions answered. Since you know his number, I would keep calling back and leaving messages to the effect that since your own vet has never used trilostane before, you are not comfortable with proceeding with Jesse's treatment until you can speak to him directly, at least once.

Since so many researchers have endorsed twice daily dosing, I agree with you -- I would want to hear what he has to say about the question. I know this is so stressful, but you are doing a great job in being Jesse's advocate and in trying to set things up in the best manner possible for him.

Marianne

P.S. If you go and take a look at this link, Vetoryl Treatment and Monitoring Flowchart, it should help you make sense of Dechra's recommendations. As you will see, according to their protocol you would give a once daily dose in the morning with breakfast. This is because Jesse's subsequent monitoring ACTH tests must be performed 4-6 hours after having taken the trilostane. The goal is to lower his post-ACTH result to between 1.45 and 9.1, and to keep his symptoms controlled consistently throughout the day. Once his ACTH result falls within that therapeutic range, if his symptoms are controlled initially but recur again later in the day, you will know that the trilostane is losing its effectiveness too rapidly and twice daily dosing may work better for him. In that event, the overall daily dose will be increased by a small amount and then divided in two.

[Patricia ann Wh]

Re: Jesse just diagnosed with Cushings

Marianne -- THANK YOU

I was beginning to think I'm starting menopause and just plain going crazy.

So - if his symptoms are always worse at night already, if I give the am dose - his symptoms could be worse - because they always are anyway - or because the trilostane has lost its effectivesness. How will I know which reason is causing that?? And if 90 milligams is what he wants me to start with once a day- why not try 45 and 45 twice a day, wouldn't you then cut out the 1st step that may or may not be right to begin with.

I have been trying to talk to Peterson. I'm beyond frustrated.
Thank you 10 billion no gazillion times over Marianne

[labblab]

Re: Jesse just diagnosed with Cushings

And if 90 milligams is what he wants me to start with once a day- why not try 45 and 45 twice a day, wouldn't you then cut out the 1st step that may or may not be right to begin with.
Marianne

That is really the million dollar question for us all right now. That is one reason why, selfishly, I am also really interested in your having the chance to talk to Peterson directly for his clarification (and why I'm hoping our other member Katharine will get some current info from UC Davis). In light of the research recommendations and "common sense," it is puzzling why Dechra has not changed their treatment protocol.

However, clinicians may just feel that it is a less complicated process to arrive at an optimal dosing schedule if you start out first with once-a-day dosing. My own dog was the first trilostane patient for my specialist nearly five years ago, and research was already coming out endorsing twice daily dosing. So even though Dechra's recommendations were to start with once a day (they were "Arnolds" at that time), I prevailed upon my vet to let us start with twice daily dosing right from the beginning. However, we ended up making a lot of dosing adjustments along the way, and in retrospect, I always wished that we had just started out with the easiest regimen first to see whether it was sufficient.

Since Jesse's symptoms always seem to be worse at night, though, I can see why you especially want to consider an evening dose. So I'll keep my fingers crossed that you will soon be able to talk to the great "OZ" himself!!

Marianne

P.S. And in answer to your question, I don't think there would be any "wondering" about a shift to twice daily dosing if, in fact, Jesse continues to exhibit recurrent symptoms at night after an ACTH test shows that his cortisol level has been lowered sufficiently in the morning. I think the shift would be a done deal -- it would be clear that the trilostane's effect was waning too quickly and not providing the relief he needs at night.

[frijole]

Re: Jesse just diagnosed with Cushings

Patti my heart goes out to you... you have so many docs with so little time! I am glad you clarified that even though Peterson is "advising" your dog -he is NOT talking directly to you. This is my concern. I worry that Peterson assumes your doc understands cushings "basics". I also worry that your doc can't understand what he's told and will miss something. In other words - I fear their might be a breakdown in communication.

Your doc might be adamant against giving prednisone but I find it hard to believe a cushings specialist would be. I would call Peterson's assistant up and point blank ask. And I would get me some prednisone.

Hugs
Kim