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Thread: Links for good over view on what GPA is and how it is treated.

  1. #11
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    This paper had some interesting things:
    Treatment of ANCA-associated vasculitides (AAV)



    Unfortunately access is limited, so I suppose you need to be on a university computer or such to be able to retrieve it.

    It mentioned MTX could be used for remission induction in non-organ threathening conditions and as maintenance.

    It mentioned that the main cause of death is infections (about 50% of deaths) instead of active vasculitis. They refered to this study about it:
    Early mortality in systemic vasculitis: relative contribution of adverse events and active vasculitis.

    Early mortality in systemic vasculitis: relati... [Ann Rheum Dis. 2010] - PubMed - NCBI

    If I understood correctly it also said that RTX isn't necessary safer than Cyclos (something about safery profile?) but had some other benefits.

    You do really have to take my comments with a large grain of salt. I mean I've read my share of academic papers in the past, but none of them have been related to medicine and I had a hard time understanding many of the comparisons since I know so little about all of this. Also I wasn't particularly interested in reading abotu RTX or cyclos since there are no plans for me to use either.

    I did find it really interesting to know that infections kill more of us than the actual disease (assuming I understood that correctly).

    Maybe a bit off-topic but I'm not really sure how much time I want to spend reading scientific articles about this disease though. While I do think its important for me to know how this disease works and what to expect, but then again the comparisons of different studies doesn't really give much to me. I suppose I'll just continue browsing the forums hoping for some interesting tid-bits and hope the facts have been at least somewhat peer-reviewed by member here who have a better understanding about the subject than I do. Also I think practical guides are much more beneficial for me, like the advice given by many of the members who have had this condition for years.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  2. #12
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    Our broken immune systems and the immuno-suppressant drugs we take for treatment do make any infection very dangerous for us.
    Knowledge is power! Wisdom is using it to make good decisions!

  3. #13
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    For those of you that are on Facebook, consider joining the closed group "Vasculitis: More Common Than You Think. More Serious Than You Know."

    It seems to have quite a lot of interesting links and info related to vasculites and currently almost 300 members. with more being added all the time.
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  4. #14
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    Found a really nice overview of Weg, so I'll put it here so noobs at the forum can find it easier

    Vasculitis: Granulomatosis with Polyangiitis and Microscopic Polyangiitis
    Diagnosed 08/2013, Relapse 07/2014, Relapse 5/2017 (although early signs of it from 12/2016)

  5. #15
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    Quote Originally Posted by Wegetarian View Post
    For those of you that are on Facebook, consider joining the closed group "Vasculitis: More Common Than You Think. More Serious Than You Know."

    It seems to have quite a lot of interesting links and info related to vasculites and currently almost 300 members. with more being added all the time.
    Thanks! I just joined it.
    Anne, dx'ed April 2011

  6. #16
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    A friend of mine started that group. He is very funny.
    Phil Berggren, dx 2003

  7. #17
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    Quote Originally Posted by Wegetarian View Post
    For those of you that are on Facebook, consider joining the closed group "Vasculitis: More Common Than You Think. More Serious Than You Know."
    .
    Hi, there are more groups on fb:
    https://www.facebook.com/groups/2254691112/
    https://www.facebook.com/groups/wegenersgranulomatosis/
    https://www.facebook.com/groups/180399172072972/


    but I must say that this forum is the best.
    thank you so much Andrew
    Last edited by Alysia; 09-06-2013 at 03:19 PM.
    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.

  8. #18
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    I agree that this forum is the best. I always wonder about all the people with WG I see on FB and wonder why they aren't here with us.
    Anne, dx'ed April 2011

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