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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 have had Anti-MAG since 2008, and have kept informed as much as possible. I strongly urge everyone with the disease to follow the FaceBook group: “Neuropathie anti-Mag”. Started by a fellow in Paris, its worldwide members — many from America and the UK — are some of the most informed, and informative, around.
@dervish thanks for the info, I just requested to join the group, ut's pending, but can't wait to get any new perspectives.
You’re welcome. You’ll be admitted. It’s an excellent source. Activate the translation button if any post, or response, is non-English; works well.
@dervish
I'm in now just starting to read others with the condition experiences so far I haven't read anything about Long Lived Pasma Cells and the critical role they play in anti-mag neuropathy, and why rituximab may not work or may take years to work.
Must admit that, almost twenty years diagnosed, Long Lived Plasma Cells is a whole new area for me. Don’t know where to go for information. It’s my understanding some research indicates Rituxan may only have positive results, variously manifested, for approximately 40% of folks with the disease. If I’ve learned anything about it, when it comes to Anti-MAG, one size certainly does not fit all.
@dervish
Long-lived plasma cells (LLPCs) are specialized immune cells that reside primarily in the bone marrow and act as the body's long-term "memory" for antibodies. While most plasma cells die shortly after an infection clears, LLPCs can survive for decades, or even a lifetime, providing continuous protection against pathogens you have already encountered.
LLPCs are the reason why a single course of vaccinations (like measles or polio) can protect you for your entire life. However, they can also be a double-edged sword; in autoimmune diseases, LLPCs can mistakenly produce "autoantibodies" that attack the body's own tissues, and because these cells are so hardy, they can be very difficult to eliminate with standard treatments.
They are why rituxan doesn't seem to work for everyone. There are no treatments that go after them as well but the risk is the more of your immune system you are taking out to get rid of the anti-mag You're also increasing your risk of infections and possibly cancer.
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Correction 2nd to last sentence should not have "no," in it. There are in fact several new treatments that do destroy the long lived plasma cells but they can seriously compromise your immune system.