Is anyone suffering with Anti MAG neuropathy?

@mamacwb I have had anti-mag pn since 1991 and have not found an effective treatment for the disease. My neurologist recently prescribed Vyvgart which I understand is FDA approved for CIDP. Protocol is one injection of the stuff every week for four weeks. My last shot will be next Tuesday. So far, I have not noticed any change in pain level. Recently, I found medical articles that, as best as I can understand them, say that there is anecdotal evidence that there have been a few cases where treatment using BTK inhibitor therapy (ibrutinib, zanubrutinib, or acalabrutinib) has produced some pain relief caused by anti-mag pn. BTK inhibitors, however, are not FDA approved for anti-mag pn and the use of the drug for anti-mag pn is definitely an off-label use. For pain, I take the daily maximum dosage of gabapentin and tramadol. However, these drugs only take the edge off of the foot pain. Good luck. Walter Cooke

I have not heard of this Anti Mag that causes Neuropathy. My Mom, who is 97 has been complaining about her leg Neuropathy for a few years now. Not one of her doctors can tell her how to treat it. All they say is, “well, she’s 97 years old and those things just happen”. Nonsense!! There has to be something they can do for her. She’s begun falling now and she lives in an Assisted Living Facility, independently. She won’t go to Assisted Living, she’s adamant about it and wants to continue to live on her own. How can she when she continues to fall. She will break a bone one of these days and then she’ll just be in bed! Does anyone have any suggestions on how to treat this? She’s seen all of her doctors and not one of them has helped her.

Was diagnosed with Anti-MAG in 2008, fortunately just as the disease was beginning. 2008-2010 = Rituxan. 2010-2012 = Fludarabine. With plasmapheresis throughout. Pretty aggressive treatment but, thankfully, went into remission in 2014. In 2021, my titers were 102,000 — it was back. Since then, have been on BTKs; first oral Ibrutinib and, now oral Zanubrutinib (“Brukinsa”) since 2023. Believe it’s helping to stop Anti-MAGs progression. Take Lyrica daily.

What I’ve learned is that everyone’s different; what helps one person may not help the next. Second, that the disease is mercurial; how I feel in the morning may not be how I’ll feel that same night. And, third, after being disappointed for years with neurologists, Idiscovered neuromuscular doctors who seem to understand the disease better.

There’s a Facebook group called “Neuropathie anti-Mag” begun by a fellow in Paris. It’s a great place to meet others worldwide and learn invaluable information.