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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)
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@katiekins

I started Camzyos a few weeks ago and immediately felt much better (feel ok most of the time anyway) started with terrible side effects headaches etc…. Came off for a week and restarted for several days and side effects returned. Now free of the drug but feel absolutely terrible. I am worse than before and now am looking at surgery as could not get up small hill yesterday Which is normally fine for me. Thus drug has changed something in me. Very very upset but glad for all you lucky people that it is working for.

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nanakpm | @nanakpm | Feb 13 9:22am

I hope you get good advice on your next steps. I stayed on Camzyos against my doctor’s recommendation to give up and have surgery. I was feeling so much better and had no side effects, even though my gradient was not improving. I was able to get an enzyme test through my family doctor to see how I metabolize the drug. Seems I need a higher dose. Went up to 15mg and finally the gradient went down by 50%! I’m praying this continues. I wish we were part of a study on longer term effects of Camzyos. I want to
be optimistic but always wonder what’s next! A new drug, afacamten, is awaiting approval. For people who don’t respond well to Camzyos. Maybe your doc knows about it. Hope you feel better.

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