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Thread: Newly diagnosed - Any success stories with Tristolane?

  1. #21
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    Yes. Here they are:

    Endocrinology
    3/4/20 (Order Received)
    3/4/20 1:11 PM
    TEST
    Cortisol - Pre ACTH
    Cortisol - Post ACTH
    Cortisol - Post ACTH #2
    (Last Updated)
    RESULT REFERENCE VALUE
    0.7 μg/dL
    1.8 μg/dL
    1.7 μg/dL


    Vet said this was too low and lowered dose from 20mg daily to 10mg daily. Vet said he consulted with 2 other Vets and a Vet Lab results expert at IDEXX and they all agreed that lowering dosage was appropriate so as not to induce Addisons.

    Clinically Rexie is doing well. Running around, playing, eating, chasing cats, etc.

    Should I be worried???
    Last edited by Bamafanroz; 03-05-2020 at 02:40 PM. Reason: Spelling error

  2. #22
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    Thanks for letting us know!

    Dechra's protocol is to stop the med for up to 7 days then restart at the lower dose. So please keep a very close eye on him for any signs of low cortisol - loss of appetite, loose stools/diarrhea, nausea/vomiting. If you see any of those stop the med. Since he seems to be doing so well I don't feel tooooo bad about him continuing on the lower dose but do keep an eye out for any of those signs. Plus I know he has a really good mom and that helps a great deal.
    "May you know that absence is full of tender presence and that nothing is ever lost or forgotten." John O'Donahue, "Eternal Echoes"

    Death is not a changing of worlds as most imagine, as much as the walls of this world infinitely expanding.

  3. #23
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    So..... I’ve been thinking about what you just told me. I’m going to stop the Vetoryl completely through the weekend. He’s doing great, but there is no need to push this so hard, so fast. I will never forgive myself if something happens to him. I’ll restart the Vetoryl at the 10mg dose on Monday night. He goes back for another ACTH Stim test in 12 days. Then we will have a better idea of how his cortisol levels are controlled on the 10mg dosage. I read in the Package insert that the cortisol can keep lowering even if dose is not increased. He’s at the very lowest “normal ranges” in both post injection doses. I’m just not willing to take the risk. I’ll keep you posted as to any changes. He is doing well clinically and it’s been fabulous to sleep all night instead of taking him 3 times a night to potty, but it’s not worth his overall health by any stretch.
    Thoughts??

  4. #24
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    Hi again from me. Here’s the actual published warning that Dechra provides in their U.S. product insert for Vetoryl:

    If the ACTH stimulation test is < 1.45 μg/dL (< 40 nmol/L) and/or if electrolyte imbalances characteristic of hypoadrenocorticism (hyperkalemia and hyponatremia) are found, VETORYL Capsules should be temporarily discontinued until recurrence of clinical signs consistent with hyperadrenocorticism and ACTH stimulation test results return to normal (1.45-9.1 μg/dL or 40-250 nmol/L). VETORYL Capsules may then be re-introduced at a lower dose
    .
    It’s the post-ACTH level that is being referred to here. So technically, Rex’s cortisol has not fallen far enough to warrant completely stopping the medication. I see that his blood chemistries were also checked this week, and I’m assuming that the balance of potassium and sodium was normal?

    If so, and since Rex is outwardly doing so well, I personally would probably just drop the dose as the vets have recommended, as opposed to stopping it entirely. You definitely don’t want his cortisol to drop any further, but right now it is still within the desired therapeutic range. I suspect that cutting his dose fully by half will allow for a fairly quick rebound even higher. It may even turn out that halving the dose won’t allow for sufficient control of his cortisol long-term. However, the good news is that a 5 mg. capsule of Vetoryl is also available if it turns out that Rex’s “sweet spot” is somewhere in between the two doses.

    I certainly don’t want you to worry unduly over the weekend, or to take what feels like a risk to you. But I did want to explain why, at this point, the vets are likely advising you to just drop Rex’s dose rather than to stop it altogether, especially since he seems to be doing so well.

    Marianne

  5. #25
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    One other note — I just noticed that you said you were planning to restart Rex’s Vetoryl on Monday night. Have you been giving the Vetoryl with dinner instead of breakfast? If so, what was the timing of his dosing prior to the ACTH test? He needs to be tested 4-6 hours after dosing along with a meal. If the timing of the test was different than that, the results need to be considered quite differently...

  6. #26
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    I gave the dose at breakfast for testing and since we have started Vetoryl. But I had an early morning meeting and could NOT get him to eat ..... but that’s typical of Rex...... he’s a weirdly strange eater from day one but that’s another story ��

    So...... that morning I decided I could not give his med because he hadn’t eaten. Then..... I got the call later that day to reduce dose to 10mg. So I gave it to him at evening when he is used to eating and it’s so much easier for me to give it to him! My thoughts were to give at night until a few days before testing then start mornings again and then go back to evenings got the sake of my family’s sanity. Is this really bad??? I’m trying to balance and juggle everything .... family, stressful job, etc and just trying to do my best for all of us. Sigh. This is not as easy as it sounds..... one pill a day ��

  7. #27
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    You get a gold star for juggling, that’s for sure!!! And no, under the circumstances, your plan doesn’t sound crazy. If dosing in the evening generally works best, I say go for it. And yes, I’d normally just suggest switching to the morning again a few days before testing. However, if Rex refuses to eat in the morning, that does skew the test results. Vetoryl needs to be given with food to be metabolized properly, and therefore we assume that cortisol levels won’t be lowered as much if the Vetoryl is given on an empty stomach.

    If Rex didn’t eat the morning of his test, this may mean that his cortisol level consistently runs even lower on normal days when he gets dosed with supper. If so, then yes, taking an actual break from the medication may be the safer route to go. And if he commonly refuses to eat in the morning, he might be a candidate for a different method of monitoring called a pre-pill monitoring test.

    There is an alternative to the ACTH that is being offered especially in the U.K. It involves simply taking a baseline cortisol reading right before the administration of the regular dose of Vetoryl. It is not as widely known in the U.S., and it appears as though the method is still being “tweaked” for optimal use. But if Max commonly refuses to eat in the morning, it might be a good option to be considered if it’s possible for him to have blood drawn late in the day, before eating dinner and taking his Vetoryl. Take a look at this link re: “Pre-Vetoryl Cortisol Monitoring.”

    https://www.dechra.co.uk/therapy-are...tisolSuperPage

    This is a link you can also pass on to your vet. Unfortunately, the U.S. offices of Dechra aren’t offering official technical support for this monitoring method since it has not yet cleared the FDA approval process for published Vetoryl literature here. However, I think your vet can learn enough from the U.K. link posted above if it seems to be an option worth considering. All-in-all, it might work out better with your family’s overall daily schedule.

    I surely don’t want to add to your burden by throwing in yet another variable. But in moving forward, you do need to let your vet know if Max won’t eat breakfast and you’re regularly dosing in the evening. We want to make sure that his monitoring will be as accurate as possible.

    Marianne

  8. #28
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    Thanks so much for all of this valuable information.

    I have never given the Vitoryl without Rex eating a full meal. This is why it’s so difficult. I have pressure cooked unsalted chicken, rice, geeen beans and yellow squash and have to heat it up and Then..... hand feed him one bite at a time in the am. This takes minimally 45 minutes. I wrap his Vetoryl in a piece of low fat cheese and he then eats like a champion.

    I truly don’t have the time to do this every am. It’s not his schedule and he’s almost 12 years old.

    Rex woke us up twice last night to potty. I am going to give him Vetoryl 10mg tonight at his full normal dinner time and then switch back to am dosing 3 days before next ACTH Stim rest. I am pretty sure my Vet is going to eventually use the pre-pill monitoring when we stabilize his Cushings and solidify a proper dosage. He knows I struggle with am meals but says we need to do it this way until we get treatment plan solidified.

    Does this sound ok?
    Last edited by Bamafanroz; 03-06-2020 at 12:02 PM. Reason: Spelling error

  9. #29
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    Yes, it does, and bless you for taking such good care of your boy!

    Marianne

  10. #30
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    Default Re: Newly diagnosed - Any success stories with Tristolane?

    You are giving me hope and confidence that I am doing my very best for my beloved, Rexie! He is our heart and such a part of our family! I’ll do whatever it takes to ensure his proper care and treatment. I want his quality of life to be maintained and will continue to seek out great info from you to help me along this journey of having a cushpup!

    I honestly don’t know where I’d be right now if I hadn’t found this wonderful group of knowledgeable people!!! Thank you from the bottom of my heart!

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