Replies to Was diagnosed at Mayo’s. The only treatment for it is Rituxan, however this drug can come...

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Neuropathy | Last Active: 8 hours ago | Replies (31)

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@pkeelan56

Was diagnosed at Mayo’s. The only treatment for it is Rituxan, however this drug can come with serious side effects and it only improves the symptoms in 30-50% of cases. Not good enough percentage for me (at least for now) to end up with possible serious infections. Rituxan is an immune therapy that kills B-cells. We need these cells in our body to produce antibodies to fight infections. While it’s killing off the clonal bad B cells, it’s also taking the good B cells with it. In a very low percentage of cases, in can be associated with a brain infection called PML. No cure for this besides supportive therapy. I don’t need this. There are other drugs being tried like the BKT inhibitors but I’m not sure how widely they’re being used. Johns Hopkins has a trial using Rituxan with some other immunotherapy drug. I think it’s called the IMAGine trial. I have found that exercise helps with my symptoms.

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Replies to "Was diagnosed at Mayo’s. The only treatment for it is Rituxan, however this drug can come..."

marcwall | @marcwall | 15 hours ago

@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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