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Type: Posts; User: Susan B

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    Re: Covid vaccins and WG

    I also have not developed antibodies even after a booster, (testing was done only 2 weeks after). My rheumatologist did suggest I could get another booster in 6 months, depending on the course of the...
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    Re: Covid vaccins and WG

    Itís true that caution is warranted. I got my booster 2 weeks ago, 5 months after last Rituxan, and my rheumatologist ordered antibody testing. Unfortunately, I came back negative for COVID...
  3. Thread: Third Vaccine

    by Susan B
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    Re: Third Vaccine

    Thatís precisely what I did based on my rheumatologistís recommendations. Had a delay in the plan because of a cold, but then I got my COVID booster followed by flu vaccine 2 weeks later. This will...
  4. Re: New medication approved for ANCA vasculitis.

    Here is more about the clinical trial.

    https://clinicaltrials.gov/ct2/show/NCT02994927?term=ADVOCATE&cond=ANCA+Associated+Vasculitis&draw=2&rank=1
  5. New medication approved for ANCA vasculitis.

    For anyone interested:

    https://trialsitenews.com/chemocentryx-announces-fda-approval-of-tavneos-avacopan-for-treating-anca-vasculitis/
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    Re: Covid vaccins and WG

    Iím 24 hours out from my 2nd dose of Pfizer vaccine. So far I only have arm soreness and a headache which went away with over the counter meds. Iím taking 5 mg prednisone daily and am now 6 months...
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    Re: Flare up and Rituximab route questions

    Perhaps you have already started treatment by now, but in case this helps...

    Per the protocol at my hospital, the infusion is started very slowly and the rate is incrementally increased as long as...
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    Re: Covid vaccins and WG

    Got my first Pfizer vaccine 2 days ago. Only side effects are a sore arm and maybe a little fatigue.

    My last Rituxin was at the end of September, and my rheumatologist advised me to wait 4 weeks...
  9. Re: New User with no diagnosis. Looking for advice.

    I’m sorry to hear you’ve been struggling with these serious symptoms for so long—too long. Others have already mentioned getting a second opinion and being persistent so I don’t have any new advice....
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    Re: Coronavirus and GPA

    For those concerned about the speed of vaccine development—hope this helps.

    Dr. Pat Winokur, infectious disease specialist at the University of Iowa, gave this explanation as to why they have...
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    Re: Coronavirus and GPA

    If I understand correctly, some trials with humans and animals ran concurrentlyónormally humansí would only come after animal studies are completed. That and the great deal of urgency and a huge...
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    Re: Covid vaccins and WG

    Meant to include this quote in my last post—Natty, wondering if things are getting better? Hope to hear you are improving.
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    Re: Covid vaccins and WG

    (Edit: Whoops—see below.)
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    Re: New member diagnosed in January 2020

    Thank you, Chadwyk!

    Itís nice to have a place where you can find shared experiences.

    I think getting a viral illness might have catapulted me into full-blown disease in the lungs. Had a lot...
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    Re: Coronavirus and GPA

    Thanks for the info! I just responded to the vaccine thread hoping for information like this. My workplace will begin vaccinating next week and I really want to get the vaccine if possible.
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    Re: Covid vaccins and WG

    I’ve put through the question of whether the vaccine is safe for me to my rheumatologist, but haven’t received an answer. I’m very curious as to what any of you are hearing. My hospital will start...
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    Re: New member diagnosed in January 2020

    Iím glad, too. Thanks, Natty!
  18. Thread: Tympanoplasty

    by Susan B
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    Re: Tympanoplasty

    Thanks for the info drz!

    Iíve got one TM perforated for the better part of one year now. At first it was thought it might heal on its own after I came down on Prednisoneóplus elective surgical...
  19. Thread: Tympanoplasty

    by Susan B
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    Tympanoplasty

    Has anyone had a tympanoplasty to repair a ruptured ear drum? Iíve seen GPA as an indication on a few sites, but then many here seem to have recurrent problems requiring ear tubes. If not the...
  20. Thread: Hair Loss.....

    by Susan B
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    Re: Hair Loss.....

    Hubby and I agree Iíve lost at least 2/3 of my hair so far. Iím guessing it could have been caused by ďrapidĒ prednisone taper, from 80mg to 5mg in about 4 monthsí time.

    Itís not a big deal to...
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    Re: New member diagnosed in January 2020

    Hello to you, Pete. It may be a club no one wants to be in, but it sure seems to have some great members!
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    Re: New member diagnosed in January 2020

    Thank you, drz.

    The timing was obviously unfortunate. I did not make clear in my post—I was not formally seen by ENT until early October. I self-treated with informal advice from various...
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    New member diagnosed in January 2020

    Hi all! I’m Susan—50 years old and from Iowa, USA. I’ve enjoyed looking through the forum for the past several days and have found that many of you all have had similar experiences. Here is my...
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