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Anti-mag neuropathy

Neuropathy | Last Active: 6 hours ago | Replies (35)

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Profile picture for marcwall @marcwall

@pkeelan56 Are you saying that Mayo said that Rituxan is the only treatment for anti-MAG neuropathy? That would shock me. Checkout: Brukinsa (newest BTK Inhibitor). You can Google the results... but I think Brukinsa is effective (eliminating IgM impact on myelin-nerve lining) in 71.4% of cases with the effects evident in an average of 4.6 months. Brukinsa has far fewer (common) side effects than Rituxam but Rituxam is probably used in more virulent (higher IgM) cases than Brukinsa.

My Anti-MAG antibodies (AMA) test was positive (reading "1531") and one-month after starting my Brukinsa, my AMA reading was <900 (normal range 0-999). Having said that, my neuropathy pain (24/7 foot numbness) was a bit worse. Apparently, that is to be expected as the drug attacks the nerve lining IgM clonal cells. When the die, the dead cells have to be removed and filtered through the kidneys and that takes time. I'm waiting patiently for the 4-5 month positive outcome.

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Replies to "@pkeelan56 Are you saying that Mayo said that Rituxan is the only treatment for anti-MAG neuropathy?..."

@marcwall
Were you ever treated with Rituximab?
Is Brukinsa infusion or a daily medication?

Wishing you the best for your new treatment.
Thank you

@marcwall I haven’t taken any treatment for it except for exercise, which helps mine. I really want to stay away from Rituxan. I don’t want to end up with some opportunistic infection or get the low percentage but yet deadly PML. As a retired pathologist, I’ve diagnosed PML a number of times and the outcome can be devastating. I may consider a BKT inhibitor in the future. We’ll see. But until then, it’s daily exercise and weight training.