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← Return to Neuropathy and Waldström
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Neuropathy | Last Active: 2 days ago | Replies (29)
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Hi - just catching up with threads. Glad I did!
I have been on a BTK inhibitor (Calquence - aka another name for Zanubrutinib) for about 9 months. IGm was 1400 and now about 750. I have ideopathic PN.
While the BTK inhibitor is clinically working, my symptoms (numbness) is not dissipating.
My hematologist is adding Rituximab. I go for counseling prior to starting soon. I am hopeful that (in time) the myelin sheath begins to grow back and the symptoms dissipate.
Replies to "@co64 Hi - just catching up with threads. Glad I did! I have been on a..."
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@pbettend
Hello! Interesting to hear more about people taking BTK inhibitors. Calquence (acalabrutinib) is a bit different from Zanubrutinib but both drugs essentially target abnormal B cells. There's so many strange drug names for these products!! From what I read, the Zanubrutinib should help with neuropathy (my hope!!) which can be caused by Waldenstroms lymphoma, plus lower my IgM numbers. Mine are over 3400. I go in this Thursday. I could easily talk myself into denial other than my feet tell me otherwise. Not pins and needles pain; it just feels like I have duct tape wrapped around my toes and feet. I wish you well with your new treatment. All the best!