Anti-mag peripheral neuropathy and BTK inhibitors

Posted by wcooke @wcooke, Mar 13 5:27pm

I understand that a few doctors in the US are prescribing BTK inhibitors to treat anti-may pn and have had some success. Has anyone received such treatment and if so, will share name and contact information of your doctor? Thanks in advance. Walter Cooke

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Gregory Gettas | @ggettas | Mar 14 11:33am

Walter, I’ve been on BTKs for the past three years; beginning with first generation Ibrutinib, subsequently graduating to second generation, Zanubrutinib (Brukinsa). For me, it’s helped; slowing, I feel, the disease’s progression. What was numb before BTK administration remains numb (if not a bit more so), but not much new. My neuromuscular doctor at Banner in Tucson is Dr. Holli Horak who I respect beyond words. She understands Anti-MAG, is compassionate, and whip smart. Long waiting list, but I couldn’t recommend her higher. Hope this helps. Best, Gregg