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I have Sjogren's neuropathy of my legs. Anyone try Rituximab?
My SFN biopses of my knee and ankle were "zero". I am doing IVIg and getting worse. What sort of testing should I demand from my neuro? (his' also a neuromuscular expert). What do you think of rituximab?
I think something needs to be done now!
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@positivehealth I discontinued it as it did not help.
@suetex
Hello
Thank you
Sorry to hear
Hopefully you have found some other treatment.
How many times did you get treatment for Rituximab and did you have any bad side effects?
Hi- I am just getting my 2nd Rituxan infusion this wk for Sjogrens & CIDP .
Nothing else has worked over past 2 yrs. For balance & weakness. I’m fortunate that I don’t have a lot of pain. Methotrexate & Plaquinil do help for joint swelling & stiffness though.
My neurologist was hesitate to do anything except ivig & vyvgart due to infection risks but rheumatologist more so just does regular blood testing.
Will see how it goes.
I tried 3 courses of Rituximab before I quit. And I didn't have any side effects. Like-wise, I don't have pain, just weakness in my legs which continues to grow. It could be worse.
@penn Have you found relief from your GI symptoms in the past 18 months? It’s been a messed up long journey for me. Pelvic PT knowledgeable. Rheum said symptoms likely from Sjogren’s. I find GI NP confusing. Tuesday appt with GI doc and NP. It’s been awhile since I’ve seen the MD. Preparing for meeting. I’ve been on a BRAT diet for two weeks and it has helped a lot. No interest in eating, this is a first for me.
Tomorrow I get my second round of Rituxin and Rheum will make adjustments so we know if this is the right path. First dose last March and results were amazing. I had pain where I didn’t know I had pain. It’s a good start and gave me peace.
I had a Kenalog “booster” a couple months later.
I also take a couple of RXs.