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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 5 hours ago | Replies (821)Comment receiving replies
Joint paint on Camzyos? Had my Camzyos increased from 5mg to 10mg just over 2 weeks ago and have had 2 bouts of really peculiar joint pain. Sitting idle, and over the course of about 1-2 minutes every joint in my body - spine, knees, knuckles, jaw,... - builds from zero to almost crippling pain and then suddenly subsides just as fast. Has never happened in living memory. I can't imagine it being related but the only thing different is the move to higher dose Camzyos. Sound familiar to anyone?
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I am not a physician. Only a HOCM patient and a 2 year user of Camzyos with great results. I would schedule a consult with a neurologist to get a different out of the box perspective on your strange symptoms.
That is:
Two short, but intense episodes over 2 weeks. (not all the time).
Transient episodes (2 to 4 min. total) with pain over your entire body at the same time (central nervous system?).
No such problems during the period you were on 5 mg dose.
Before giving up on Camzyos, I would both see my cardio and consult a neurologist for evaluation. Get the two specialists to talk with each other. Maybe you and both doctors ( and us) will learn something helpful!