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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (807)Comment receiving replies
I am in month 4 of trying Camzyos. It seems to have a negative effect on exertion symptoms - the recovery is longer and symptoms come on abruptly. I have asked my cardiologist if I can stop taking it as I feel no benefit. Now waiting to hear from the prescribing cardiologist to stop and go back to Rythmodan. On the bright side during that same conversation Dr Ong is going to co-ordinate my surgery for septal myectomy and mitral valve repair. Fingers crossed it happens before Christmas 🤞🤞
Replies to "I am in month 4 of trying Camzyos. It seems to have a negative effect on..."
Please write again on this thread after your surgery. Would love to know how things went for you. May I ask how old you are and if you are an NYA class 3 or 4? Best of luck that you are scheduled before the holidays!
I, too, had no benefit. I took obit for 8 months and had a septal myectomy 6 weeks ago. I feel better after the septal myectomy, although still recovering. I feel I wasted time. I was very sick on camzyos.
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Update
I stopped taking Camzyos 5 days ago since I was feeling even more tired and anxious on it. Today I feel better, just a bit more general muscle tightness and soreness than usual. My blood pressure medication is helping my heart stay as healthy as possible until the Camzyos is out of my system. Up to 30 days is what I read. Is that correct?