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  1. Thread: Need a referral

    by Pete
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    83

    Re: Need a referral

    I see Dr Alexandra Villa Forte at Cleveland Clinic. In the nearly seven years sheís treated me, Iíve been on methotrexate and rituximab. Current meds are an annual dose of rituximab and bactrim 3x...
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    Re: Ear issues - experiences

    It seems that some meds can cause tinnitus. If this dumb disease doesn’t get you one way, it’ll find another...

    https://health.clevelandclinic.org/tinnitus-5-strange-reasons-for-ringing-ears/
  3. Thread: Transplant

    by Pete
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    19,253

    Re: Transplant

    I’ve noticed the same thing. Last year, my heart catheterization was delayed for several hours because my creatinine was too high. It took awhile to hydrate me to the point where my creatinine...
  4. Thread: Mags

    by Pete
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    172

    Re: Mags

    I donít know if this is worthwhile, but itís from a good source and germain to this thread...
    ...
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    Re: Your personal experiences in treatment?

    Eileen ann

    It looks like your daughterís meds are pretty standard. I started at 60 mg of pred daily, but dosage may be related to weight (I forget). When the dosage gets below 10 mg, the taper may...
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    Re: Your personal experiences in treatment?

    Eileen ann

    Sorry to learn your daughter is afflicted with this disease. A couple questions: What was her original dose of prednisone? How much is she taking now? How much MTX is she taking?
    ...
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    Re: Rituxan maintenance dose

    Fortunately, my insurance (and Medicare) have never refused to cover treatment for GPA. Sad that you have to deal with this...
  8. Thread: Went to duke

    by Pete
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    257

    Re: Went to duke

    Masha

    Glad to hear you found a great doc. Looking forward to more posts about continuous improvement!!!
  9. Thread: Transplant

    by Pete
    Replies
    206
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    19,253

    Re: Transplant

    gilders

    Iím glad to see the good news keeps on coming!!!
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    Re: Your personal experiences in treatment?

    cawcawcaw

    The good news is that I found an excellent wegs doc about 18 months in. She got me into a long-term remission, so retirement has become pretty much what I hoped it would be. Iím involved...
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    Re: Your personal experiences in treatment?

    I was retired nine months when GPA hit me. My first symptoms appeared in mid-December, and I went downhill pretty quickly thereafter. I doubt that I could have done my job (desk work with a lot of...
  12. Thread: Transplant

    by Pete
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    19,253

    Re: Transplant

    Your sense of humor is outrageous!! Glad to see it!! Lol
  13. Thread: Nine years

    by Pete
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    195

    Re: Nine years

    Jaha

    Glad youíre still with us and doing better!!
  14. Thread: Transplant

    by Pete
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    19,253

    Re: Transplant

    ​Great news, Pete!! Normal is a good thing!!
  15. Thread: Transplant

    by Pete
    Replies
    206
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    19,253

    Re: Transplant

    gilders

    Seems like two steps forward and one step back...
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    Re: Happy Birthdays Thread

    Happy birthday, Kirk!! Hope itís an awesome celebration!!
  17. Thread: Transplant

    by Pete
    Replies
    206
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    19,253

    Re: Transplant

    gilders

    Did your doctor say anything about how long it would take for you to recover from the transplant itself? Was anything said about how much your bloods might fluctuate during recovery? I...
  18. Thread: Transplant

    by Pete
    Replies
    206
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    19,253

    Re: Transplant

    gilders

    Any chance the procedure can be done under ďtwilightĒ anesthetic? When I had my colonoscopy, thatís what they gave me. It was two drugs, one of which was fentanyl. I was kind of awake, but...
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    Stress and Vasculitis

    From Cleveland Clinic:...
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    Re: ENT in the US who knows GPA well

    Possibility at Mayo/Phoenix: https://www.vasculitisfoundation.org/event/phoenix-vasculitis-regional-conference/
  21. Thread: Transplant

    by Pete
    Replies
    206
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    19,253

    Re: Transplant

    @gilders

    You’ve had several miracles to get this far. I hope there’s another one in the offing for you.

    How is your Dad doing?
  22. Thread: Transplant

    by Pete
    Replies
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    19,253

    Re: Transplant

    gilders

    Rats!! I thought the stars were aligned in your favor on this. Hope they get the problem solved muy pronto!!
  23. Re: How long can you be on 60mg prednisone and can you go back up from 50?

    Hello mater,

    One of the things most of us come to realize is that treating wegs is a combination of art and science. Each personís experience is a bit different. That said, I was on 60 mg of pred...
  24. Thread: Transplant

    by Pete
    Replies
    206
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    19,253

    Re: Transplant

    gilders

    I think youíre rightly concerned to be concerned about a sudden change in your vision. Iím glad the specialist didnít see anything wrong. Perhaps a second opinion by another specialist...
  25. Thread: Hereditary?

    by Pete
    Replies
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    Re: Hereditary?

    Another piece of research about heredity and wegs...

    https://www.the-rheumatologist.org/article/research-shows-genetic-links-in-anca-associated-vasculitis/
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