I have a history of systemic osteoarthritis and spinal stenosis so honestly find it difficult to assess to what extent or even if BTK meds aggravate it. However, I’m convinced it does but much more so Ibrutinib than Zanubrutinib. My back deteriorated massively whilst on Ibrutinib evidenced by MRI’s before and after. I was eventually taken off Ibrutinib due to severe myalgia and arthralgia. Of course the additional issue is being unable to take anti inflammatories whilst on these meds at the very time the joints are crying out for them.
It’s interesting to see from this article that a third of patients report joint and bone pain whilst on BTK’s;
‘When looking at how often do joint, muscle, or bone pains occur, study results vary, but about a quarter to a third of people who take a BTK inhibitor drug, such as ibrutinib, experience this side effect.’
Yes, I have had this experience. I am 20 months into Zanubrutinib therapy, and tend to use a heating pad much of the time, and take Tylenol. Once, at about 12 months into treatment, I had severe pain in the kidney area, yet kidney stones were ruled out. An MRI of the area indicated inflammation. My hematologist told me that it could be a small bit of CLL remaining along the spine. I don’t know. The severe pain eventually passed. I have had osteoarthritis preceding treatment, but I think that the moderate pain that I experience daily now is greater than it was pre-treatment.
Thanks for your reply. It sounds similar to my pain. Hopefully the “stat” order will get me in in the next day or two. I haven’t ever had any back pain issues before.
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