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Thread: shankxonline - My path to identify GPA and overcome it

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    Apr 2011
    Olympia, Washington
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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by Alysia View Post
    On 2015 I had a wg flare in my eyes. I caught it "on time" so it was only episcleritis. (Lighter then scleritis).
    Sounds like your wg is active and that you need a stronger med. Mtx is not strong enough to treat a flare. It is only for maintenance. Also in my case mtx didn't work, only rtx.
    Please talk with your wg dr. And ask for a more serious treatment asap. Sending you prayers.
    For some people, MTX is enough to serve as an initial treatment and to treat a flare. I was started on Cytoxan because I had lung involvement. I think I could have been taken off it a few months earlier than I was and switched to MTX. When I did switch, my doc at the time prescribed too low a dose of MTX, only 10mg a week. Part of that time was overlapping with CTX. Eventually, on the low dose of MTX alone, I had a flare, which was taken care of by raising the dose to 15mg per week, where I have been ever since. Eventually I had another flare, a bit less serious than the first. I had been tapering prednisone and was down to 10mg, which was raised to 20mg, which worked fine, and I slowly tapered back down to my current 5mg. So I did not need to go on any stronger drug to get out of those flares, which consisted of increased nasal crusting, coughing and trouble breathing, low grade fevers, night sweats, and increased fatigue. If I were to get new significant eye issues or any kidney issues, I would not mind a doc telling me I needed RTX or some other stronger med. But no one has ever told me I'm in remission, so it's hard to say whether my MTX is for some kind of maintenance or as a continued treatment, since I still have excess mucus in my sinus and lungs, moderate peripheral neuropathy in my feet, coughing, and fatigue, etc., which I don't consider a flare, but just business as usual. I think those things are related to permanent damage, and I will always have them. My point is that every case is different in severity and symptoms and what doesn't work for one person may work for someone else, and not everyone needs the strongest meds, although there will always be that possibility someday.

    Sent from my MotoE2(4G-LTE) using Tapatalk
    Last edited by annekat; 01-06-2020 at 05:07 AM.
    Anne, dx'ed April 2011

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