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    Re: I got a 2020 Present!

    I know that blu4runner had a knee replacement last fall, if that helps.
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    Re: Any virtual workout buddies out there?

    Since I got over the ďvirus thatís going aroundĒ, I decided to make some lifestyle changes. Our house is next to one of the community hiking/biking trails, and we live about 1/2 mile from the local...
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    Re: Not a diagnosis I expected

    Youíre in good hands with Dr Villa Forte.

    For me, remission has been pretty much a return to normal. Hope itís the same for you!!
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    Re: Starting Methotrexate

    Iím not sure how quickly mtx induces remission. Itís probably faster than rituximab and slower than cytoxan. Mtx replaced cytoxan in my treatment regimen. My mtx dosage ranged from 20-25 mg/week. I...
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    Re: Not a diagnosis I expected

    Jim the Restless

    Welcome to the club! Iím nine years in following a similar disease onset. Fortunately, I was retired when the disease hit, so I didnít have a job situation to worry about.

    If...
  6. Thread: Avacopan

    by Pete
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    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,...
  7. Thread: Avacopan

    by Pete
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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...
  9. 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!!
  11. Re: prescription process- the path from the Dr to the Pharmacy

    John S

    I must add a hearty Amen!!

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

    by Pete
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    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!!!
  14. 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...
  15. Thread: Transplant

    by Pete
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    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!!
  16. Thread: Newly Diagnosed

    by Pete
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    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...
  17. Thread: Recent Diagnosis

    by Pete
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    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...
  23. Thread: Flare up?

    by Pete
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    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...
  24. Thread: Avacopan

    by Pete
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    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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