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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (807)Comment receiving replies
Hello
Having HCM, I have been on Camzyos since November of 2023. I started on 5 mg and then in March was reduced to 2.5 mg. because I was doing so well (my cardiologist was following the BMS protocol). However, I found that that dosage was not giving me the same visible results that the 5 had done so I asked to be put back up to 5 mg. I’ve done so well. No other medication has changed.The difference is amazing in that I can now walk up hills without getting winded plus, more importantly for me I regained my joie de vivre. I see my cardiologist next week and I hope that the tests show what I feel is a huge improvement. I’m 76.
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Replies to "Hello Having HCM, I have been on Camzyos since November of 2023. I started on 5..."
@boatsforlife Your comment about skipping meals and losing weight because eating made your symptoms worse really struck me. I have Hashimoto's so I've always blamed this on my medication. Could HCM be 'the cause' of that? I see the cardio for this medication this week. I do not have obstructed so I hope I will qualify. My recent echo was very concerning. If you could elaborate on the symptoms you got from eating I'd appreciate it. For me, its dizziness and fatigue get much worse.
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Went to the cardiologist last week.When I first saw him last summer, my gradient was 79%. All I wanted to do was sit down and give up. As I said in my previous post, I started on Camzyos in November 2023 and seem to have found the correct dosage of 5 mg. The recent echocardiogram showed that the gradient was now 15%! The only medication different for me has been the Camzyos. Quite the impressive reduction, my cardiologist says. Wishing you all good health.