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  1. Replies
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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. Thatís 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 doesnít seem to give me any side effects. I get a slight reaction...
  3. Re: Need a good Wegeners rheumatologist in Phoenix.

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

    Birdie

    Maybe itís time to get your Comgressman involved. The VA should be putting you first, not their f****d up bureaucracy.
  5. 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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    Re: High Blood Pressure and Fast Heart Rate

    I met with my cardiologist today. I asked him about the cause of my elevated resting pulse rate. When I was younger and in great shape, my resting pulse rate was generally in the 60s. Now, at age 74,...
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    Re: Suspected Sneaky Kidney Involvement

    I ask out of ignorance and confusion: what analgesics can people with kidney issues take safely? I have stage 3 CKD thanks to GPA.
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    Re: Reactions to Covid-19 vaccinations

    I had a sore arm at the injection site for about 24 hours after both shots. About 18 hours after the second shot, I had flu-like symptoms that lasted for about 18 hours. I had chills, muscle aches,...
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    Re: Coronavirus and GPA

    This makes me a little nervous. I got 500 mg of rituximab four weeks after my second Pfizer shot.

    Autoimmune-disease drugs may reduce vaccine response; antibody treatments ineffective vs Brazil...
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    Re: Flare up and Rituximab route questions

    Lea

    I went to rtx from mtx because I was having too much fatigue from mtx. I was on both for a year, but my doctor decided I only needed rtx going forward.
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    Re: Possible GPA - nasal deformity

    Rae82

    I was reviewing this thread to see which doctors you have consulted and did not see a reference to an otolaryngologist (ear, nose, and throat). Since your blood work doesnít indicate GPA, it...
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    Re: Ongoing Sinus Issues

    Hi Robert,

    I hope you live reasonably close to Cleveland so that you can see Dr Alex on short notice if the nasal symptoms become more active. I call rheumys the doctors of mystery diseases. I...
  14. Thread: Wegners in ears

    by Pete
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    Re: Wegners in ears

    Answer to your first question is yes. The answer to your second question is beyond my body of knowledge.

    Good luck!!
  15. Thread: Wegners in ears

    by Pete
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    Re: Wegners in ears

    BAHA=bone anchored hearing aid

    Rush Limbaugh wore them.
  16. Thread: Wegners in ears

    by Pete
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    3,960

    Re: Wegners in ears

    Hearing has been my most pronounced ongoing GPA issue. Before disease onset, I had tinnitus (high pitch squeal) and some hearing loss due to environmental causes (military and worked in steel mills...
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    Re: Possible GPA - nasal deformity

    Hi Rae,

    I donít have any experience with saddle nose deformity, but annekat and Alysia do. Hope they chime in soon.
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    Re: Coronavirus and GPA

    My wife and I got our second doses of Pfizer vaccine on 2/23. My wife had minimal reaction to it, but I had flu-like symptoms for about 24 hours. Feeling normal now. Next rtx is March 22.
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    Re: Covid vaccins and WG

    Update: Iím almost 48 hours past my second dose of Pfizer. I had some pronounced side effects yesterday ó fatigue (I took a two-hour nap yesterday afternoon and went to bed a couple hours early last...
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    Re: Covid vaccins and WG

    My wife and I got our second dose of Pfizer vaccine yesterday. Weíre so thankful to Ohio State University for the great process to schedule and administer these vaccines.

    If you have access to...
  21. Thread: Avacopan

    by Pete
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    Re: Avacopan

    Looks like avacopan will be approved to treat ANCA Associated Vasculitis soon.
    ...
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    Re: Coronavirus and GPA

    Cathy and I had our first doses of Pfizer two weeks ago. Second dose is next Tuesday. Dr Villa Forte wanted me to have covid vaccine at least three weeks before my next dose of rtx. Looks like Iíll...
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    Re: Flare up and Rituximab route questions

    My rtx infusions have been non events. The first one lasted about five hours and the rest around four. In addition to rtx, you will get a drug cocktail of solumedrol (steroid), benadryl, and tylenol...
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    Re: Coronavirus and GPA

    John S

    Iím just behind you. We get our second doses of Pfizer on 2/23. OSU has used MyChart to notify people of their eligibility for vaccination and to schedule appointments. Itís worked very...
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    Re: Coronavirus and GPA

    PattyL

    The first shot produced only the minimal injection site reaction. No fever, malaise, nothing. I get the second dose on 2/23. I hope I do better than I did with the second dose of shingrix...
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