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Type: Posts; User: Pete

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  1. Re: Y’all settle in and I’ll make this quick… hopefully

    Talk to your doctor. I’m vaccinated, but can’t take a booster until late February - a month before my next rtx. Over the holidays, our entire extended family will have been vaccinated, so it’s off to...
  2. Re: Y’all settle in and I’ll make this quick… hopefully

    ​Sounds like you're in good hands. MUSC= Medical University of South Carolina?
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    Re: Sinus issues - what to expect?

    When I was dxed almost 11 years ago, the nasal biopsy confirmed I had GPA. I don’t remember too much about it as I was “twilight” sedated (conscious but unaware) as I was also getting a bronchoscopy...
  4. Thread: kidney failure

    by Pete
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    Re: kidney failure

    @gmyl

    Wow!! Compared to yours, my numbers are the picture of health. My creatinine has been edging up to 1.6 and my eGFR has been edging down through the mid 40s. I have an appointment with a...
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    Re: Happy Birthdays Thread

    Happy birthday, Chief!! Glad you’re enjoying your day.
  6. Thread: Avacopan

    by Pete
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    Approved to treat AAV

    From the Vasculitis Foundation: https://ir.chemocentryx.com/news-releases/news-release-details/chemocentryx-announces-fda-approval-tavneostm-avacopan-anca
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    Re: Rituximab maintenance

    I’ve been getting rtx since 2014. Started with two 500 mg spaced two weeks apart. In 2016, I graduated to an annual 1,000 mg dose. In 2020, I was changed to 500 mg every six months (new research said...
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    Re: Cyclophosphamide (Cytoxan)

    I was on cytoxan for 16 months. The dosage (as I recall) is based on your weight. I took 50 mg 3x daily.

    I was on 40-60 mg of pred the whole time. I regained the 15 lbs I lost at disease onset...
  9. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    jmq

    I think seeing such a specialist wouldn’t hurt — and might help.

    i had tinnitus for many years before GPA thanks to no hearing protection in a variety of loud environments. I have about 40%...
  10. Re: Tinnitus got significantly worse after 1st Rituxan infusion, thoughts?

    jmq

    You may want to see a an ENT or neurologist about your hearing issues.
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    A great doctor wants our help

    I met with Dr Alexandra Villa Forte at Cleveland Clinic yesterday for a check-up and rtx infusion. The infusion and check-up went well, but, as we talked, she asked me what she could do to be a...
  12. Thread: Third Vaccine

    by Pete
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    Re: Third Vaccine

    I had my rtx infusion today (500 mg). Dr Villa Forte gave me a choice: get a COVID booster no later than tomorrow or wait 5 months after infusion (and one month before my next one). I opted to wait....
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    Re: Does any one else have days like this?

    Hi Lily

    You're grieving the loss of your grandparents. You're dealing with the aftereffects of a dangerous disease while dealing with another one that's chronic that probably caused a major change...
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    Re: Ongoing GPA symptoms with negative labs

    Hi Nancy,

    Have you asked your rheumy to consult with a vasculitis specialist? Perhaps someone at Cleveland Clinic or Mayo Clinic can get things sorted out for you.

    Good luck!
  15. Thread: Been a minute

    by Pete
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    Re: Been a minute

    Hi Lily

    There hasn’t been much activity here lately. I guess some folks post more on the Facebook pages.

    Glad to hear you’re doing well. I am, also.
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    Re: Managing symptoms and treatment for a flare

    The Vasculitis Foundation and the American College of Rheumatology just published their guidelines and recommendations for treating ANCA Associated Vasculitides.
    ...
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    Re: Pred Taper Completed

    As of yesterday, I’ve been off daily pred for three years. Still feeling good!
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    Re: We have got a healthy baby

    Kitekite

    Congratulations on the birth of your strapping boy!! Glad to hear all is well!!
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    Re: I am a new member & fairly newly diagnosed

    KathyTPA

    You might want to investigate this a bit: https://www.bizjournals.com/tampabay/news/2016/09/28/bay-area-hospital-joins-mayo-clinic-network.html

    You may be able to have your local doc...
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    Re: First post - diagnosed in 2012

    Welcome to the club no one wants to join.

    Your disease onset sounds like the first couple of weeks of mine. Glad you have a doc who is giving you proper care. That’s the majority of the battle...
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    Re: Managing symptoms and treatment for a flare

    drz

    Wow!! You and your docs have their hands full to get you stabilized. Hope they do so quickly!!

    As for rtx. The drug itself doesn’t seem to give me any side effects. I get a slight reaction...
  22. Re: Need a good Wegeners rheumatologist in Phoenix.

    Go for it!! You've got a lot to lose if you don't!! Good luck!!
  23. Re: Need a good Wegeners rheumatologist in Phoenix.

    Birdie

    Maybe it’s time to get your Comgressman involved. The VA should be putting you first, not their f****d up bureaucracy.
  24. Re: Need a good Wegeners rheumatologist in Phoenix.

    Dirty Don This one’s for you...
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    Re: Rituxan side effects two weeks later

    I have no recollection of nausea as a side effect of rtx. You might want to check with your wegs doc and/or primary care doc. Just because you have wegs doesn't mean something else isn't going on...
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