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Type: Posts; User: Pete

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    Re: Eyes, Prednisone Blood Sugar

    Masha

    It sounds like youíre in pretty good shape for the shape youíre in. I hope you continue to improve.
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    Re: Losing patience / covid

    Welcome back @greenjeep!

    Getting Covid under control with vaccines that don’t trigger wegs flares will be a great blessing. Fortunately for me, the Pfizer vaccine has produced nothing beyond...
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    Re: Hi I'm Arlene and I'm new here!

    Hi Arlene,

    Iím sorry that youíve had such a bad time over the past months.

    While it seems your preferred doc is compassionate, what about experience treating GPA? When I was diagnosed, the doc...
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    Sticky: Re: How to know when you're having a flare

    Roaming joint pain was an indicator of an impending flare for me when I was tapering off pred too quickly. I did manage to get off pred and still keep the disease under control. It took nine months...
  5. Thread: Hearing Issues

    by Pete
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    Re: Hearing Issues

    MaxD

    I forgot to mention that my hearing aids have no impact on patulous ear. I have the issue only in my right ear (where wegs made its first attack).
  6. Thread: Hearing Issues

    by Pete
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    Re: Hearing Issues

    Hi MaxD,

    I had tinnitus for years before wegs hit. Wegs did contribute to additional hearing loss. My ENT says thereís little that can be done to relieve tinnitus.

    Hearing aids have been a...
  7. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Quote: I am curious about "I lead a lifestyle very similar to my pre-GPA life" ... Maybe it is due to covid and I am newly diagnosed 12/11/20, no flare since 6/21. I have nearly lived in isolation....
  8. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Hi Arlene,

    I’ll take a shot at a few of your questions.

    1. Given where you are with the disease, it probably won't become life threatening on its own. Some other issue may arise, and that could...
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    Re: Hi I'm Arlene and I'm new here!

    Hi Arlene!

    Welcome to the forum. Iím sad that youíve had such a time getting diagnosed, but GPA is often difficult to diagnose because so few doctors think to look for it. I hope the rituximab...
  10. Thread: Evusheld

    by Pete
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    Re: Evusheld

    For me, the hassle was minimal. I called my PCPís office on Thursday, had an online consult with infectious diseases on Friday, and got the shots on Tuesday.
  11. Thread: Evusheld

    by Pete
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    Re: Evusheld

    The explanation I was given for how Evusheld works follows. It prevents the spike proteins in the Covid virus from attaching to other cells, thereby facilitating the elimination of the virus from the...
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    Re: Let's talk about "limited" Wegeners...

    Good one!!!😂😂😂
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    Re: Let's talk about "limited" Wegeners...

    I believe some doctors are using the term ďmildĒ. I donít know if that addresses the issue. (I think not.)
  14. Thread: Forum activity

    by Pete
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    Re: Forum activity

    I have also been a forum member for 10 years (barely).It's been a godsend to me in that it helped me find Dr VillaForte and get answers to so many questions.

    As luck would have it, a good friend...
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    Re: Evusheld and Ritmuxin

    Middlesista

    I asked Dr Villa Forte at Cleveland Clinic the same question. Short answer is that evusheld does not deplete rtx antibodies, but complements them.
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    Re: Italian Restaurant Near CC

    Try this one:

    https://www.tripadvisor.com/Restaurant_Review-g50207-d396646-Reviews-Angelos_Nido_Italia_Restaurant-Cleveland_Ohio.html

    My wife and I ate here a few years ago after rtx. Nice, old...
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    Re: Any virtual workout buddies out there?

    When I had my last visit with Dr VillaForte, I asked what I could do to reduce the neuropathy in my feet. It had gotten to the point where I was only walking every 2-3 days because my feet were so...
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    Re: New Member : Husband Diagnosed in January

    MegD

    I hope your hubby is improving quickly. Iím 75 and 11 years in with GPA. Iím pretty healthy now and lead a pretty normal life for a guy my age. (Golf season is almost here.)

    A couple...
  19. Re: Rituximab Might Be Only Immunosuppressive Raising Mortality Risk in COVID-19

    I had two 500 mg rtx after my Covid shots a year ago. I had an antibody test in December that did not detect any Covid antibodies. Got a booster right after the test. Had another antibody test last...
  20. Re: Anyone here receive Evusheld for covid prevention?

    I got Evusheld yesterday. The doc said I should develop some immunity almost immediately. Also said Iíll need another dose in about six months. As for the shots themselves, it was a noneventó no...
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    Re: Cyclophosphamide (Cytoxan)

    jrslim

    While youíre on cytoxan, be sure to stay hydrated and urinate whenever you feel the urge. The metabolites of cytoxan are hard on the bladder. A longer-term side effect is bladder cancer. ...
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    Re: Covid vaccins and WG

    I was fortunate (and politely persistent enough) to receive Evusheld today. My PCPís office connected me to an infectious disease specialist who listened to my story of three vaccinations, two rtx...
  23. Re: Anyone here receive Evusheld for covid prevention?

    Ohio State just notified me that I am eligible to receive Evusheld. Iím waiting to hear from the pharmacy about the when and where. Hope itís soonÖ
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    Re: Covid vaccins and WG

    Well, I guess rtx works really well for me, but at the cost of immunity to Covid. I had a Covid antibody test today and have no detectable antibodies. I got the first two doses of Pfizer last...
  25. Re: Anyone here receive Evusheld for covid prevention?

    I just had a note from Dr VillaForte. Iím a candidate for evusheld. The trick is getting it. There arenít many doses available.
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