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  1. Thread: Leukemia

    by Pete
    Replies
    8
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    355

    Re: Leukemia

    BobW

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

    by Pete
    Replies
    8
    Views
    355

    Re: Leukemia

    BobW

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

    by Pete
    Replies
    2
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    62

    Re: Liver Spots

    Iím 73, and I have a bunch of Ďem. Doc says not to worry. They go with the territory...
  4. 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...
  6. Thread: hearing loss/baha

    by Pete
    Replies
    7
    Views
    447

    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...
  7. Thread: Meds

    by Pete
    Replies
    6
    Views
    196

    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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    413

    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...
  16. Thread: Your Thoughts

    by Pete
    Replies
    9
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    218

    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...
  17. Thread: Your Thoughts

    by Pete
    Replies
    9
    Views
    218

    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...
  18. Replies
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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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    Re: Imuran Side Effects

    @Mattieus

    Did you get a TMPT test before starting immuran? This test checks to see if your liver can metabolize immuran. I didn’t get the test, and the drug made me very sick (GPA flare plus...
  21. Re: Rituxin - C19 and C20 and length of B cell suppresion

    Middlesista

    I had my 19th rtx infusion today. We moved it up a few weeks (usually do it in late October) because I had a small flare last month (clobbered it with a week each of 20,15,10,5 mg)...
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    Re: Got a cold, should we go to doctor?

    Try over the counter cold medications for a few days. If his symptoms don’t change or get worse, a call to your doctor is in order. My childhood family doctor said of colds, “If you treat a cold, it...
  23. Thread: Hello from Shawny

    by Pete
    Replies
    14
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    502

    Re: Hello from Shawny

    Shawny

    At disease onset, you may get very high doses of pred. I started at 60 mg. I think there are people on here who have been as high as 80.

    Just a word of caution. Don't taper too fast....
  24. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    shankxonline

    Welcome aboard!! I hope you can get great treatment leading to a full recovery. I’m 8 years in and back to a nearly normal lifestyle — making a few accommodations for being 73 yo.
    ...
  25. Replies
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    13,090

    Re: Happy Birthdays Thread

    Would that make you a Re-Pete?? Happy birthday ó and many more!!
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