Search:

Type: Posts; User: gunnyl

Page 1 of 6 1 2 3 4

Search: Search took 0.01 seconds.

  1. Replies
    4
    Views
    712

    Re: Long term Rituximab

    All of my tests came back negative for PML but I am still changing my regimen to something less immunosuppressive after the scare. Just not worth the risk to stay on RTX. I've gotten sick often and...
  2. Replies
    4
    Views
    712

    Long term Rituximab

    Curious how many of my fellow Weggies have been on Rituximab long term.
    I've been getting RTX infusions for 9 years now.
    I recently experienced some neurological issues and was tested for PML...
  3. Thread: Hi, I'm Matt.

    by gunnyl
    Replies
    4
    Views
    849

    Re: Hi, I'm Matt.

    Welcome aboard Matt


    Sent from my iPhone using Tapatalk
  4. Replies
    5
    Views
    988

    Re: Seasonal Allergy Question

    Consult with your doctor but I always treat allergies the same as I always have; independent of GPA.


    Sent from my iPhone using Tapatalk
  5. Re: Dr. Appt. - Vaccine did not work (no antibodies)

    I like Meredith never generated antibodies from the vaccines. I got Evusheld in June during my RTX infusion and can say with certainty that it worked for me. I had close proximity with my son the two...
  6. Replies
    18
    Views
    4,226

    Re: How are you doing ?

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


    Sent from my iPhone using Tapatalk
  7. Replies
    193
    Views
    157,990

    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...
  8. Replies
    193
    Views
    157,990

    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...
  9. Replies
    9
    Views
    2,201

    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...
  10. Replies
    8
    Views
    2,270

    Re: Happy birthday wegeners-granulomatosis.com!!

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


    Sent from my iPhone using Tapatalk
  11. Replies
    9
    Views
    2,201

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

    Getting mine in conjunction with my infusion in June


    Sent from my iPhone using Tapatalk
  13. 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.
    ...
  14. Replies
    18
    Views
    4,226

    Re: How are you doing ?

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


    Sent from my iPhone using Tapatalk
  15. 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.
  16. 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...
  17. 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.


    Sent from my iPhone using Tapatalk
  18. Thread: B Cells

    by gunnyl
    Replies
    1
    Views
    796

    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...
  19. Thread: Third Vaccine

    by gunnyl
    Replies
    44
    Views
    11,365

    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...
  20. Thread: Third Vaccine

    by gunnyl
    Replies
    44
    Views
    11,365

    Re: Third Vaccine

    Interesting analogy


    Sent from my iPhone using Tapatalk
  21. Thread: Third Vaccine

    by gunnyl
    Replies
    44
    Views
    11,365

    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...
  22. 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...
  23. 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...
  24. Thread: Third Vaccine

    by gunnyl
    Replies
    44
    Views
    11,365

    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. ...
  25. 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. ...
Results 1 to 25 of 135
Page 1 of 6 1 2 3 4