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

  1. #31
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    Default Re: shankxonline - My path to identify GPA and overcome it

    Quote Originally Posted by Alysia View Post
    Hi,
    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 06:07 AM.
    Anne, dx'ed April 2011

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  3. #32
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    Default Re: shankxonline - My path to identify GPA and overcome it

    Update Mar 9, 2020:

    Sorry folks - didn't get a chance to post an update for some time. Gone through many more steps and tests and docs to be now here...

    I did get a second opinion from UCSF vasculitis specialists here in SF and the doc confirmed from the symptoms and tests that I do have GPA. While the joint pains have gone, my right eye issue with redness and pains persisted with Prednisone and now on MTX 25mg/week. Followed up with eye doc specializing in inflammatory conditions and they have dx ed me with scleritis (mild). The eye docs are recommending me to move to Rituxan infusion from MTX to really get a control over the eye issue.

    I am still in denial and the thought of "infusion" of a new drug is weighing on my mind. Everything you read about Rtx points to cancer - and I don't want to think about it

    But .. anyone here who has had scleritis and Rtx experience? Did it work? What are the side effects of Rtx compared to Mtx? How concerned should i be?

  4. #33
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    Default Re: shankxonline - My path to identify GPA and overcome it

    My last flare included scleritis in one eye. Pred cleared the scleritis up immediately with no effects, then went on to 3 infusions of RTX to down the flare. I used to take MTX after 1st flare. MTX had more side effects for me than RTX...after 3 infusions of RTX, I feel as well as I've felt in over a year, and just as good as when MTX was working if not better (no immediate side effects). Best to you.
    Knowing how to think empowers you far beyond those who only know what to think. -NdT


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