I have Sjogren's neuropathy of my legs. Anyone try Rituximab?

Rituximab has a very high copay with my insurance $700.00 each session.
Plus there’s no guarantee it will work, so I’ve decided not to try it.

@suetex - I think I read in another post that you mentioned you had SFN but don't have any pain or numbness and the skin punch biopsy's were negative at the knee and ankle but you have problems with balance. Is balance your main neuropathy symptom you are dealing with?

While you wait for other members to respond, here is a link showing the discussions and comments by members for Rituximab - https://connect.mayoclinic.org/search/?search=Rituximab

I understand being practical, we all have a lot of things to consider. But my Out of Pocket is $2500 and I am going to spend it on something. So I want to learn what my choices are.

Actually my SFN byopses were zero, not negative. Not exactly the same. When an answer is an actual count, then, in this case, I can only imagine that my body is distroying nerve fibers as fast as they are made. Otherwise, the count would have at least been a small number. This is what I want to explore.

Maybe this is a dumb question but do the biopsy results being zero mean they didn't find any nerve fibers in the biopsy at all? What neuropathy symptoms do you have?

Not a dumb question in the least. Easy answer is yes, that's what it means. Keep in mind that the long nerves that move my legs and are myelated are not affected. (That's what we are referring to when we speak of "sciatica") The short fibers are tiny unmyelated (just a few mms) nerve fibers that do alot for us, such as tell us where we are in space. I do not have the usual numbness or pain which is one reason it took so long to diagnose. I do have loss of weight bearing balance, which prevents me from even standing around my horses. They could lay me out without even meaning to. I still rode for awhile (my balance is fine from my seat) but with muscle wasting, now I can't even do that. I'm still learning a lot about my nerves so hopefully I've given you an accurate picture

Thank you for sending the link. I am really intrigued by the study done with PMR and Rituximab. I have thought for awhile now that the pain in my quadriceps were PMR pains come back to haunt me. This rhummy (not the one that treated PMR) doesn't think so. Would be ironic to treat two diseases at once....

My out of pocket would be roughly 5k for the 5 sessions of Rituximab and honestly there’s nothing in the study I read that said it worked for CIDP.
Everything I’ve tried over the years has not worked for me,including 8 mos of IVIG infusions,so I’m going to hold off for now.
I would love to hear of positive results from anyone that has gotten Rituximab infusions.

I have had peripheral polyneuropathy for 12+ years. No pain ever, but increasing numbness/weakness/leg fatigure/balance issues, beginning at feet and now up to knees. Hematology specialist MD diagnosed me with lgM MGUS (Monoclonal Gammapthy), which he thinks might have contributed to my neuropathy. He offered Rituximab infusions as possibly helping with neuropathy, but only in 30% of treatments and that could be months or a year hefore see any improvement, if do see any. I did two sets of 4-infusions each. He said to return in a year (April 2024) and see if any neuropathy improvement. After 10 mths since last infusion, I have not seen any improvements, and actually leg numbness/fatigue/balance has advanced further up to my knees. Would be interested in learning if anyone has had these infusions and seen any improvement.

Your journey is of great interest to me. I wonder if you would be considered to have Sjogren's. I think there is a lot of overlap. Not that knowing that would help. Thank you for posting.