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Thread: URGENT- which hospitals & docs best for Wegener's in California, Nevada or Western US

  1. #21
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    I have to agree with the others, and when I was at the symposium I heard people saying no more than three months on ctx -- don't know if that has become to offical 'standard of care' though.

    I also met (I think unfortunately), patients who had been on ctx for a few years and who were extremely reluctant to give it up as they believed it was keeping them alive and not hurting them.

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    I agree with y'al... but that is all I have in the west coast. I am looking for a WG Dr. as well. There is an apparent Weg specialist at Stanford, but I will confirm this when I meet her (or do some more research) in Dec. Her name is Conielia Weyand. She was at Mayo before she joined Stanford. I am rather surprised at the lack of tranction on WG in the west coast despite it having one of the best institutes in the US.

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    Quote Originally Posted by elephant View Post
    Flana, how come your Rheumatologist didn't switch you to imuran, cellcept, or methotrexate? Just curious. Are you off prednisone?
    Elephant hello, I am on 100mg Imuran and 100mg Cytox. Plan is to taper the Cytox and up the Imuran dosage.

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    Quote Originally Posted by JanW View Post
    I have to agree with the others, and when I was at the symposium I heard people saying no more than three months on ctx -- don't know if that has become to offical 'standard of care' though.

    I also met (I think unfortunately), patients who had been on ctx for a few years and who were extremely reluctant to give it up as they believed it was keeping them alive and not hurting them.
    Well keeping one for more than 6months on Cytox has some real bad side effects I am told... bone marrow cancer/bladder cancer and what not - guaranteed?

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    The doc you cite is not a WG specialist -- I saw her speak at the Symposium and she in fact specializes in large cell vasculitis -- I think she's done groundbreaking research in temporal arthritis, if I'm not mistaken -- and that's what she was there to speak about.

    Closest vasculitis center to you would be Cedar Sinai in SoCal (but I'm not sure if that's up and running yet) or University of Utah (which is).

    This disease is so rare that there is no rhyme or reason to why the specialists are where they are. I'm sure the only reason my ENT is here is because he is from NYC, or he would be with his former colleagues from NIH who are now all in Cleveland.

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    That's a real bummer!. I was really expecting her to be a Weg specialist. I guess I will need to make an appt. in JH. My sister lives in NJ, I think this is not a bad proposition, but then i cannot go there often.

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    Raj, you wouldn't have to go there much, just establish yourself as a patient and have them oversee your care.

    Jan, isn't Dr Chung in California a Wegs doc?

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    Yes, Dr. Sharon Chung is listed with the VF as one of their Medical Consultants at U of C San Francisco.

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    Quote Originally Posted by flana View Post
    Well keeping one for more than 6months on Cytox has some real bad side effects I am told... bone marrow cancer/bladder cancer and what not - guaranteed?
    Extract from a 2004 paper on the subject -

    Results: The median cumulative doses of cyclophosphamide among cases (n = 11) and controls (n = 25) were 113 g and 25 g, respectively. The risk of bladder cancer doubled for every 10 g increment in cyclophosphamide (OR = 2.0, 95% confidence interval (CI) 0.8 to 4.9). Treatment duration longer than 1 year was associated with an eightfold increased risk (OR = 7.7, 95% CI 0.9 to 69). The absolute risk for bladder cancer in the cohort reached 10% 16 years after diagnosis of Wegener's granulomatosis, and a history of bladder cancer was (non-significantly) twice as common as expected at the time of diagnosis of Wegener's granulomatosis.
    Conclusion: The results indicate a dose-response relationship between cyclophosphamide and the risk of bladder cancer, high cumulative risks in the entire cohort, and also the possibility of risk factors operating even before Wegener's granulomatosis.
    Jack

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    Yep, I had forgotten about Sharon Chung at UCSF, she's nice too, from what I hear.

    I guess I was thinking more along the lines of a center -- I think UCSF has the rheumy, but I'm not sure how many others (ENT, pulmy, neph, etc.) see WG.

    Obviously, because the conference was in CA I met plenty of Californians, but they really seemed to have a horrible, horrible time getting doctors to treat WG seriously. Honestly, some of the 'local' docs on the panels (not naming names) seemed way out of their depth compared to the Cleveland/Mayo/JHU/UNC/BU crew that dominated the Symposium. I spoke with more than one person whose doc refused to take them off ctx or even consider a non-medicated remission after significant periods of time of being symptom free.

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