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Type: Posts; User: gunnyl

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  1. Replies
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    Re: How are you doing ?

    Mike, sorry to hear about all you've had to endure but glad you are still here with us!!


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    Sticky: Re: How to know when you're having a flare

    My ANCAs are negative but the problem is that when it emerges I will be in the hospital before my labs can catch up with the symptoms. The longest I have ever made it between infusions was 10 months...
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    Sticky: Re: How to know when you're having a flare

    Personally I think remission is a subjective term as it applies to GPA and varies by doctor. My doctor doesn't use the term.
    My GPA is under control using RTX. Sometimes I show symptoms going into...
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    Re: Evusheld and Ritmuxin

    Update
    I got the Evusheld injections in conjunction with my infusion a couple weeks ago. It was a really rough infusion cycle and took me longer than usual to recover.
    A week and a half later my...
  5. Re: Happy birthday wegeners-granulomatosis.com!!

    Happy birthday to the site!
    It's provided priceless information to a lot of Weggies over the years!


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    Re: Evusheld and Ritmuxin

    Rituximab doesn't deplete your existing antibodies, it depletes your B cells which are needed to develop antibodies.
    According to my rheumy they don't interact with each other in any way. I am...
  7. Re: Rituximab Might Be Only Immunosuppressive Raising Mortality Risk in COVID-19

    Getting mine in conjunction with my infusion in June


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

    Called to schedule my next RTX infusion and was told I'm a candidate for Evusheld.
    Do the research on it but it looks extremely promising for Rituximab patients.
    ...
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    Re: How are you doing ?

    Still alive here [emoji2]. Hope you all are well!


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

    I also developed zero antibodies from the vaccines and booster and this reinforces what I was telling my doctors who told me to just get the vaccines.
  11. Rituximab Might Be Only Immunosuppressive Raising Mortality Risk in COVID-19

    Based on a Johns Hopkins study.

    Of note is that among 303 drugs examined in the study, only one, rituximab, a monoclonal antibody preparation that targets antibody-producing B cells, was found to...
  12. Re: Vaccines and the immunosuppressed Webinar. Oct 28th 1500 BST, 1000 ET

    Did anyone attend this event? I was in the hospital with an upper respiratory infection and missed it.


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  13. Thread: B Cells

    by gunnyl
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    Re: B Cells

    From all of my conversations with Rheumatology, go by symptoms if you know the specific symptoms as they relate to your GPA. You know your body better than any doctor and if you’re like me if I know...
  14. Thread: Third Vaccine

    by gunnyl
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    Re: Third Vaccine

    I went blind from WG before I was diagnosed. A really good ophthalmologist was able to restore my sight. Unfortunately a really bad infectious disease doctor misdiagnosed me with West Nile Virus and...
  15. Thread: Third Vaccine

    by gunnyl
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    4,250

    Re: Third Vaccine

    Interesting analogy


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  16. Thread: Third Vaccine

    by gunnyl
    Replies
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    4,250

    Re: Third Vaccine

    I had a conversation with a rheumatologist from my group at Walter Reed yesterday with regard to getting the booster vaccine. She basically told me that there are a lot of other sub-groups of T and...
  17. Autoimmune Summit Inaugural event October 15-16

    Ran across this on LinkedIn early this morning. Unfortunately this site wouldn't allow me to post from my iPhone so I had to go research the links again. I don't have any affiliation with any of the...
  18. Re: Some Doctors just don't listen and Nurses are priceless!

    I just did round two for the infection, the oral antibiotics I was prescribed leaving the hospital weren’t up to the task. Ended up having surgery to clean out the wound and close it and another...
  19. Thread: Third Vaccine

    by gunnyl
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    Re: Third Vaccine

    My experience has been that prior to the vaccine get a T-B Cell screen. If you don't have T and B Cells you will not develop antibodies from the vaccine. I got both vaccines in February and April. ...
  20. Some Doctors just don't listen and Nurses are priceless!

    So, I have had one hell of a month.

    I had an accident in July and fractured my leg and ankle in four places. I had a titanium rod inserted into the fibula and screws to pull everything together. ...
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    Re: Covid vaccins and WG

    I'm really disappointed in all of the responses I've gotten from doctors regarding the vaccines. I already replied to this about my experience with the vaccines. I got both, had zero T-B Cells so I...
  22. Re: Rituximab associated hypogammaglobulinemia:

    So, I got my results and I generated zero antibodies to the SARS-CoV-2 virus after getting both vaccines and a couple of weeks waiting.
    If you're vaccinated, it would be worth the expense to get...
  23. Rituximab associated hypogammaglobulinemia:

    For those patients on Rituximab it is very important to stay on top of your B Cell numbers post infusion. My experience has been that a lot of doctors don't take into consideration the long term...
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    Re: Covid vaccins and WG

    shankxonline - My doctors routinely do a T and B Cell screen of my blood. Rituximab wipes out your B Cells. Rituximab is a chimeric monoclonal antibody used to treat hematologic and autoimmune...
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    Re: Covid vaccins and WG

    Hi all,

    I got the first Pfizer vaccine last week. I'm 4 months out from my last Rituximab Infusion. My doctor ordered a test to check my B Cell levels and will order an antibody test after my...
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