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Thread: Links to Wegener's Granulomatosis Resources

  1. #1
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    Default Links to Wegener's Granulomatosis Resources

    Post links here in this thread to any WG resources that you find. These could be informatoinal websites, discussion groups, blogs etc etc.
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    A great WG discussion group that I'm a member of. I believe Marcy may also be a member: wgdiscussion : WG General Discussion

    My personal blog: Wegener's Granulomatosis, Wegener's Disease Blog

    Vasculitis Foundation Website: Front Page | Vasculitis Foundation

    A peachy little WG Handbook: http://www.vasculitis.org/download/WG.pdf
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    Sangye's Blog: Sweet Not Always
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    Twice's Blog: The Rognon
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    Default great support

    i have found that a group on www.wegenersnet.org is very supportive an informative. not docs but people like you and me that are weggies and are living and dealing with it daily. lots of great info.

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    Welcome to Tracheal Stenosis for those with Subglottic Stenosis. :-)

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    This is very useful: Vasculitis Patient Information

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    WegenersDisease.org : Lists top Wegner's hosptitals, FAQ, news, information regarding medications and treatments.
    http://www.wegenersdisease.org/
    Last edited by ranpar01; 06-22-2010 at 09:52 AM.

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    Copy pasted Sangyes' informative post (lessons learned) here to save trawling for it later.

    Other info from Dr Seo:

    1) About 35-40% of Weggies never go into remission.

    2) People who flare tend to have repeat flares

    3) The longest most people are able to stay in remission is 10 yrs.

    4) Weggies with kidney-only involvement (even very severe) are easy to get into a solid, lasting remission.

    5) Those with sinus involvement have the most difficulty controlling symptoms and disease activity in that area.

    6) I asked about a trend I've noticed in our group. Many people with severe kidney (and sometimes lung) involvement who received pheresis seem to have gone into remission faster than others who didn't. He said he thinks it's due more to the ctx/pred they got along with the pheresis. Hitting the disease hard with major ctx and major pred is the best way to get Wegs into a solid remission (versus stringing it along with mtx or other mild treatments). The downside--incredible toxicity and risks of that treatment.

    7) Study on using pheresis for moderate disease activity involving kidney and lung will be starting late this year. Pheresis is usually only used for kidney involvement.

    There was more... I'm just pulling all this out of my head.

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    Vasculitis Clinical Research Consortium - Take Action

    A study that is currently recruiting.
    Weggies UNITE!!

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