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Thread: Differnece between P Anca Vasculitis and Wegners?

  1. #11
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    I read some where in vf site a research doctor mentioned relapse rate in p-anca is less when compared to c-anca

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    Quote Originally Posted by pberggren1 View Post
    I really don't care where the granulomas are in me. All I know is that this disease stinks ASS.
    They've never found granuloma's in me. I've had a tracheal biopsy, and lung and kidney biopsies before - but nothing!

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    Quote Originally Posted by drz View Post
    Do most people with GPA have granulomas or know where they are located? I think I was told I may have on in middle ear that wiped out my hearing and balance but don't think it was every confirmed with a CT scan or MRI or whatever they would use to confirm its presence.

    call it what ever you want...its all the same disease and if i had my way id never read the work weggie again. remindes me of carrot sticks and i hate carrot sticks.

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    I've only had a couple of small lung granulomas. My lungs prefer to hemorrhage, which is the vasculitis aspect.

    Dr Seo told me once that Weggies tend either towards granulomas or vasculitis--that one will be predominant. Those with granulomas are easier to treat and get into remission. The vasculitis-types tend to be refractory to treatment. The rtx studies showed that rtx was better than ctx at treating vasculitis types, which was particularly great news for many of us.

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    What is rtx and ctx?

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    rituxan and cytoxin.

  7. #17
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    Rtx is Rituxan or Rituximab. It is a biological drug that targets b cells and is big gun like ctx to get Wegs into remission.

    Ctx is Cytoxan or Cyclophosphamide. It is chemo. It is the other big gun to get Wegs into remission.
    Phil Berggren, dx 2003

  8. #18
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    Quote Originally Posted by gwenllian111 View Post
    They've never found granuloma's in me. I've had a tracheal biopsy, and lung and kidney biopsies before - but nothing!
    How have you been able to get your body into riemesion without the immuno suppresants? what was your first sypmtom?

  9. #19
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    Quote Originally Posted by Sangye View Post
    Dr Seo told me once that Weggies tend either towards granulomas or vasculitis--that one will be predominant. Those with granulomas are easier to treat and get into remission. The vasculitis-types tend to be refractory to treatment. The rtx studies showed that rtx was better than ctx at treating vasculitis types, which was particularly great news for many of us.
    This is very interesting, how would we know if the vasculitis or the granulomas are more predominant in each of us? Do our symptoms point towards one or the other?
    Nicole

  10. #20
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    Quote Originally Posted by drz View Post
    Do most people with GPA have granulomas or know where they are located? I think I was told I may have on in middle ear that wiped out my hearing and balance but don't think it was every confirmed with a CT scan or MRI or whatever they would use to confirm its presence.
    I think they need the granulomas in a biopt, to confirm GPA/Wegener's diagose.
    My doc said that if he could have 'all of me' he surely would be able to show the presence of granulomas.
    Where that would be, he couldn't say.

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