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...
Type: Posts; User: gunnyl
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...
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...
Welcome aboard Matt
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Consult with your doctor but I always treat allergies the same as I always have; independent of GPA.
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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...
Mike, sorry to hear about all you've had to endure but glad you are still here with us!!
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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...
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...
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...
Happy birthday to the site!
It's provided priceless information to a lot of Weggies over the years!
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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...
Getting mine in conjunction with my infusion in June
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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.
...
Still alive here [emoji2]. Hope you all are well!
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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.
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...
Did anyone attend this event? I was in the hospital with an upper respiratory infection and missed it.
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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...
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...
Interesting analogy
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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...
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...
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...
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. ...
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. ...