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  1. Thread: Avacopan

    by Pete
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    313

    Re: Avacopan

    There are several UK folks on here who see Dr Jayne at Addenbrookes in Cambridge. Geoff, Freakyschizogirl among them.

    Iím very interested in this drug. Hoping itís a lower cost alternative to rtx,...
  2. Thread: Avacopan

    by Pete
    Replies
    14
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    Re: Avacopan

    Masha

    As I re-read the article, I saw no mention of rtx. Avacopan apparently induces remission all by itself ó no steroids needed. When I next see Dr Villa Forte (probably this fall), Iím going...
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    Re: New old guy on the block

    Nine years in now. I was released from OSU Medical Center nine years ago today. The past year saw my second minor (and third overall) flare. The disease remains well-controlled with an annual dose of...
  4. Re: A new year, new possibilities! (MikeG's back)

    Welcome back, @MikeG-2012!! Hope you get a lifetime of service with the new knee. I also hope the new eating plan gets you to your desired weight and keeps you there.
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    Re: Happy Healthy New Year

    mishb reported that it rained in Melbourne earlier today. I hope it keeps up and moves east. Stay safe!!
  6. Re: prescription process- the path from the Dr to the Pharmacy

    John S

    I must add a hearty Amen!!

    Happy New Year!!!
  7. Thread: Recent Diagnosis

    by Pete
    Replies
    9
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    297

    Re: Recent Diagnosis

    Sajo

    For me, getting rituximab is pretty much a non-event. Youíll get a big dose of steroids (usually solu medrol), some Benadryl, and some Tylenol before they start the rtx. They start very...
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    Re: Happy Healthy New Year

    Back at you Masha!!!
  9. Re: How many got the Wegners or GPA Dx without a bx?

    Bradhunter

    I had a nasal biopsy that was inconclusive (but suggested wegs) and a bronchoscopy that yielded no definite findings. However, based on my symptoms and other tests, their most likely dx...
  10. Thread: Transplant

    by Pete
    Replies
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    30,235

    Re: Transplant

    gilders

    Merry Christmas, Pete!! Iím glad to hear your kidney continues to be effective. Hope that continues into the new year and beyond!!
  11. Thread: Newly Diagnosed

    by Pete
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    426

    Re: Newly Diagnosed

    Don2000

    To answer your question. When I first got rituximab in 2014, I got four 500 mg doses a week apart once a year. For the past three years, I have gotten one 1000 mg dose annually.

    Iíve...
  12. Thread: Recent Diagnosis

    by Pete
    Replies
    9
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    297

    Re: Recent Diagnosis

    Hi Sajo

    Welcome to the club. It sounds like your rheumatologist is working aggressively to get the disease under control. Rituximab takes awhile (4-6 weeks) for full effect. Cellcept acts a bit...
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    Re: Trying to figure it all out.

    Great news!! My first appointment with her lasted almost two hours. She went over my case history with a fine-toothed comb. You may want to put together a timeline of symptoms, diagnoses, treatments...
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    Re: Trying to figure it all out.

    Iím not aware of any vasculitis specialists at Cincinnati (That doesnít mean much, btw). I was diagnosed at Ohio State, but they didnít have as much experience with vasculitis as Cleveland Clinic. I...
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    Re: Trying to figure it all out.

    At Cleveland Clinic, the top two in vasculitis are Alexandra Villa Forte MD MPH (I see her - great doc) and Carol Langford MD (Department Head).
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    Re: Trying to figure it all out.

    Hi Robert!!

    Have you considered going to Cleveland Clinic for evaluation? Iíve been going there since 2012.
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    Re: Trying to figure it all out.

    robertlevigarrett

    At the moment, all I can do is welcome you to the club and hope your docs get your symptoms matched to a condition and treat it.

    My wife was diagnosed with autoimmune...
  18. Thread: Flare up?

    by Pete
    Replies
    2
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    118

    Re: Flare up?

    Donna,

    It sounds like a flare to me. While we'd all like to be pred free, sometimes it takes a long time to get there. If you can't get rituximab soon, you may need to go on methotrexate and...
  19. Thread: Avacopan

    by Pete
    Replies
    14
    Views
    313

    Avacopan

    Could this be the treatment many of us are waiting for??

    https://www.biospace.com/article/chemocentryx-shares-rocket-300-percent-at-positive-vasculitis-trial-data/?TrackID=15
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    Re: just starting meds

    Bradhunter

    You may want to make the trek to Johns Hopkins anyway just to be sure you're getting care according to the latest protocols.

    I live in Columbus, Ohio, and you'd think Ohio State...
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    Re: Recently diagnosed

    Don2000

    Iíll second Drzís thought about consulting with a vasculitis specialist.

    For me, roaming joint pain and the purpura rash on my legs are indicators of a flare.

    Many of us have been...
  22. Thread: Leukemia

    by Pete
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    549

    Re: Leukemia

    BobW

    Army 1966-68 (draftee)
  23. Thread: Leukemia

    by Pete
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    549

    Re: Leukemia

    BobW

    Good luck. Thank you for your service from one vet to another.
  24. Thread: Liver Spots

    by Pete
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    2
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    143

    Re: Liver Spots

    Iím 73, and I have a bunch of Ďem. Doc says not to worry. They go with the territory...
  25. Re: Journey to being diagnosed, treated, and already first flare up

    Youíre not that far from Mayo. If youíre not seeing a vasculitis specialist there, it would probably be in your best interests to go there.
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