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Thread: Research! The Assessment of Prednisone in Remission Trial (TAPIR)

  1. #1
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    Thumbs up Research! The Assessment of Prednisone in Remission Trial (TAPIR)

    www.TAPIRTrial.org
    https://www.youtube.com/watch?v=WQN-fJH8oswz

    What we are studying:
    The TAPIR Trial is helping us learn more about how to manage the care of people affected by granulomatosis with polyangiitis (Wegener's, GPA) who are in remission.
    We would like to learn more about whether patients with GPA are better off being maintained on low-dose prednisone or attempting to come off prednisone altogether when they are in remission.
    Who can participate in TAPIR?
    You may be eligible to participate if:

      1. You have been diagnosed with granulomatosis with polyangiitis (GPA, also known as Wegener's granulomatosis)
      2. You have needed to take 20 mg or more of prednisone each day at some point in the last 12 months
      3. You are currently taking prednisone (Please note that you may be on other medications for your GPA besides prednisone and still participate in the TAPIR trial)
      4. You are at least 18 years of age
      5. Your physician is based in the US or you can travel to a VCRC Clinical Center

    *Other conditions may apply

    How to join the TAPIR trial:
    There are 2 ways you can join the TAPIR trial.
    *JOIN TAPIR ONLINE*
    You do not have to live near a clinical center to join! You can join online and continue to see your own doctor. Visit www.TAPIRTrial.org

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    I'm ineligible but I thought there might be some interest from the forum.

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    I am too. Off prednisone for way too long.'
    Dale
    Dx Aug, 2009 Remission June 2010 until 8/1/2014

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    I got an email for it today and wanted to take part in it, but after reading more about it I'm not eligible either. I'm taking 35mg of pred, a lot more than 6-10mg. I'll definitely keep an eye out for future emails about studies that are going on.
    Nothing can break you; you are much stronger than you think... look at what you've already survived.

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    just saw this one on fb. thanks Jana

    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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    Quote Originally Posted by lag713 View Post
    I'm ineligible but I thought there might be some interest from the forum.
    I wonder if this isn't also being addressed some what in the longitudinal study on treating GPA. I know they have a list of my meds and do lab work every time to assess things along with several clinical questionnaires. I am continuing on a low maintenance dose of 5 mg and 175 mg AZA too because it is thought it might help reduce risk of flares or relapse.
    Knowledge is power! Wisdom is using it to make good decisions!

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    It will be interesting what they conclude.Since all the drs. say you need to be on some sort of maintence drug
    Life isn't about how you survive the storm, but how to dance in the rain !

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    Quote Originally Posted by Debra C View Post
    It will be interesting what they conclude.Since all the drs. say you need to be on some sort of maintence drug
    They don't all say that. Sure there are quite a few who are entirely off meds.

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    Quote Originally Posted by MCC View Post
    They don't all say that. Sure there are quite a few who are entirely off meds.
    One study indicated 20% can get drug free and stay in remission for at least three years. More research will help clarify who is most likely to do this and what approach is most effective to do so. Right now it is a try taper off and see what happens method.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Quote Originally Posted by drz View Post
    Right now it is a try taper off and see what happens method.
    I don't think I will ever dare to try taper pred again, after last time, when I tried to reduce from 5mg to 4 mg and got the worse headaches in my life
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

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