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Question wrt use of rituximab

lilpink

lilpink

Senior Member
Messages
988
Location
UK
I have very long standing ME. I developed overt SFPN in 2011 after swine flu (positive punch biopsy). Presentation is severe neuro pain all over my skin (allodynia) and very strange reactions to almost everything in the environment such that I'm now running out of the things I need to survive.
I also have autoimmune aspects and at last am under the care of a good rheumatologist, albeit one who isn't au fait with ME per se.

Rituximab is on the cards (I'm ok with this) but what I really want to know is whether anyone (with ME of course) within or without a research study has benefited from rituximab *in terms of any sort of allergic-type reaction*? I have tried to interrogate the formal data for rituximab in ME without much success.
Do any of you know anyone who has been given rituximab (maybe as part of cancer therapy) or in a trial who has reported anything like that?
The research papers don't seem to have collected data like that.

Thanks in advance.
 
B

BNQG2RDU

Messages
15
I was started on Rituximab/Ocrevus three years ago after positive bMRI showed white matter lesions and spinal tap showed some CSF specific ab. My symptoms are much more consistent with long covid (vaccine induced) versus ME/CFS. I have only gotten worse since being on Rituximab and not noticed any improvement.
 
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