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Type: Posts; User: KathyTPA

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    Sticky: Re: Wegeners Granulomatosis / GPA specialists

    Tampa Florida - part of Vasculitis Foundation - sees GPA patients every Wednesday
    Yih Chang Lin, MD, USF - Division of Rheumatology

    12901 Bruce B. Downs Blvd.
    Tampa FL 33612
    Email:...
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    Re: Happy New Year

    Wishing Everyone a wonderful 2023, full of Fortunate Blessings, love, joy and good health.

    Thank you all for being here, it gives me comfort to know you are all here, surviving and thriving...
  3. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Thanks Pete & Masha!

    I am 61, got diagnosed 2 days after my 60th birthday. I walk outside in the mornings. in hillsborough county covid cases are 1382 per day - very high; so I am not...
  4. Re: Some questions my doctor hasn't answered (well a lot of questions LOL)

    Thanks everyone for all your words of wisdom, strength, truth and experience.

    on weight issues - while I was very sick prior to predninsone, I lost 14 lbs over a 2 month period. I stopped losing...
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    Virtual Summitt for GPA - including info on Avacopan 3.26.2022 10AM CST FREE

    Virtual Summit: Current Treatments for GPA and MPA Including the Recently FDA-approved Avacopan
    Saturday, March 26.
    Join Dr. Peter Merkel and Dr. Tanaz Kermani for an online webinar discussion...
  6. Thread: Ongoing Pain

    by KathyTPA
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    Re: Ongoing Pain

    Sorry to hear of your pain and fatigue.
    Let me share my experience.
    I get severe fatigue if I push it too far. I believe I learned from a member on this site that you can live, if you over do...
  7. Re: Hello everyone! Diagnosed with Wegeners in my early 20s

    I had alot of issues with my left eye, redness and could not see well when light was bright (monitors and sun) it hurt alot and teared... eye doctor gave me drops both antibiotic and prednisone...
  8. Thread: Third Vaccine

    by KathyTPA
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    Re: Third Vaccine

    Hello thanks for being here, I greatly appreciate it. Saturday 10/2, I have chosen to get my main medicine Rituxan Infusion in lieu of rushing to get the 3rd shot. My medicine is due now, and I do...
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    Re: A great doctor wants our help

    What an opportunity! It sounds like you have an extraordinary doctor. My thoughts on GPA, I transferred to the leading expert – Rheumy in my state. I begged him to help me with my daily severe...
  10. Thread: Avacopan

    by KathyTPA
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    Re: Avacopan

    Hi, does anyone know the side effects for Avacopan? I could not find any, and I was told they will not publish that until approval. Pred has damaged my bones, it was so beneficial for in intial...
  11. Thread: Third Vaccine

    by KathyTPA
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    Re: Third Vaccine

    Have you read the article that came out in June regarding Rituxan and the vaccine. https://academic.oup.com/rheumap/article/5/2/rkab038/6290723?searchresult=1 - it is regarding effectiveness of...
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    Re: I am a new member & fairly newly diagnosed -- THANKS

    Hello All,
    Thanks so much for all the wonderful guidance, knowledge and experience. I am starting to feel a little bit better. I had my 2nd infusion of Rituxan on 5/28/21. The week before I...
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    Re: I am a new member & fairly newly diagnosed

    Thanks for sharing your experience. Today 5/9/21 slowly feeling better, took a 25 minute walk twice this week. My sinuses are still clearing out daily, but pain is more manageable. Still fatigue,...
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    I am a new member & fairly newly diagnosed

    I fairly newly diagnosed and have so much to ask. Not sure how or where to start, here goes & thanks.

    Fall 2020, unresolved sinus situation after surgery, inflamed cornea, then hearing loss. The...
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