Anyone with Anti-Mag tried Rituximab treatment
I was diagnosed with Anti-Mag peripheral neuropathy 3 years ago. So far I have in my feet tingling, pins and neddles on and off, always numbness that goes up to just below my knees. Fingers also have similar issues but less often. Has anyone tried Rituximab and how did it go?
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I was diagnosed with monoclonal gammopathy 30 years ago. No therapies were available at the time and it slowly killed the myelin sheaths in my feet and lower legs making it difficult to walk.
About 10 years ago retuximab was offered by the clinic to stop ( or reverse?) the condition. A small amount was used first and stopped immediately when I had a reaction. After a while it was introduced again and my body did not react. I had retuximab administered several times over the next few weeks and then it was stopped for a few months. When it was reintroduced about 3 months later, I went into anaphylactic (sp) shock and was ambulanced to the hospital overnight.
I have wondered if it had been introduced and then stopped for a few minutes like the first time if my body would have tolerated it.
I am now 83 and must use a walker. I have to add that I swam laps for years and still use the gym to keep going.
My husband was diagnosed with Anti-Mag a couple of years ago, as well as CLL, Chronic lymphocyte leukemia. The symptoms have increased, so he has been on gabapentin for a couple of months and is now changing to Lyrica. Next month, he will start IVIG antibody infusions.
He has not tried Ributimax, but it will likely be the subsequent treatment. Ributimax is also the treatment for CLL if the cancer becomes active.
Thank you for your comments on this treatment.
Thank you for your post about your experience with Ributimax. My husband will likely be offered this treatment, and any information is helpful.
I am sorry that you did not have favourable results.
I have recently learned that anti-mag neuropathy is not only caused by B cells which Rituximab wipes out, but also caused by Long-lived plasma cells (LLPCs) which Rituximab doesn't affect. They are a key part of your immune system and not easily wiped out and if they are you lose most of your immunity that you have built up over your lifetime. I've been on rituximab for a couple of years and so far it's had no effect.