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.
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.