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  1. Replies
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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...
  3. 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...
  4. 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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    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...
  7. Thread: Leukemia

    by Pete
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    Re: Leukemia

    BobW

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

    by Pete
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    Re: Leukemia

    BobW

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

    by Pete
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    Re: Liver Spots

    Iím 73, and I have a bunch of Ďem. Doc says not to worry. They go with the territory...
  10. 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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    Re: Doc required in Idaho Falls

    Closest wegs doc is probably in Salt Lake City or Seattle. In either case, itís a 3+ hour drive to Salt Lake City and 11 hours to Seattle...
  12. Thread: hearing loss/baha

    by Pete
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    Re: hearing loss/baha

    GPA was the last straw in my hearing loss. I had experienced some loss as a result of too mant exposures to loud noises. I have about 40% hearing loss. Unaided, I donít hear the higher and lower...
  13. Thread: Meds

    by Pete
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    Re: Meds

    Hi Jan,

    I have Medicare and an Aetna supplement. They cover the vast majority of my care. I just got my EOB for last monthís rtx treatment. Cleveland Clinic billed my insurance $49,000 for the...
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    Re: Split decision on diagnosis

    You might want to ask your docs how many wegs patients they are treating. If the number is low double digits, please look at the Vasculitis Foundation's website (find a doctor) and see if you can get...
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    Re: New, in Palm Springs

    Hi Jan,

    Youíve figured out the site well.

    I have about 150 hours in single Cessnas. Gave it up because of the cost. Got a sports car instead. Your hubbyís plane would be a blast!!

    Iím 73....
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    Re: New, in Palm Springs

    Janzian

    Welcome to the club no one wants to join. With proper treatment, you have a decent shot at getting back to normal.

    The treatment plan you mentioned is pretty standard. The steroids will...
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    Re: Happy Birthdays Thread

    Happy belated birthday, O Grand Kahuna!!
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    Re: In process of being diagnosed

    Lea

    Your case sounds a bit like mine, although I did have some lung, sinus, and ear involvement.

    At this stage if the disease, donít be in a big hurry to get off prednisone. It will knock down...
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    Re: New Patient appointment at Cleveland Clinic

    Too bad your doc’s office is inept. That said, you’ll be well treated at Cleveland. If you can make notes of your history with wegs before your appointment — symptoms, treatments, outcomes, recent...
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    Re: New Patient appointment at Cleveland Clinic

    If your health insurance will allow it, maybe you should self-refer. Thatís what I did.
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    Re: In process of being diagnosed

    Lea

    The good news: You have a good chance of getting back to pre-wegs condition. The less than good news: It may take awhile.

    If your doc starts you on methotrexate, you should notice...
  22. Thread: Your Thoughts

    by Pete
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    Re: Your Thoughts

    IMHO (Iím not a doctor), you still have disease activity. If youíre feeling worse after each pred reduction, youíre either tapering too fast or not getting proper treatment. You might want to talk...
  23. Thread: Your Thoughts

    by Pete
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    Re: Your Thoughts

    Here are a few thoughts...

    1. Are your labs showing signs of disease activity? What is your sedimentation rate? What is your C-reactive protein? Are other tests within normal limits?
    2. Armed...
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    Re: In process of diagnosis

    @MINDYB77

    Vasculitis is often difficult to diagnose. I was diagnosed more by a process of elimination. The pulmy leading the team of docs who was treating me tentatively concluded I have GPA. They...
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    Re: Glad to be diagnosed

    Geoff

    Hey Stranger!! Glad to hear all is well with you!!
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