← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@nbs

The first three echos are 28 days apart. This was my second echo. I have another one in approx. 28 days. If my numbers stay in a normal range, I will be on 2.5 mg and then get retested every three months if there are no concerns. This is the protocol right now established by the drug company. What I find comforting is that I am fortunate that a drug has been developed and put on the market the same time I was diagnosed with OHCM and that it seems to work. Even with our small group there are people who have been debilitated for years where their only final resource was surgery. I do realize there is so much that is unknown about Camzyos being an orphan drug (the only one of its kind). Has anyone else signed papers allowing their treatment, medical tests, etc. to be used for research purposes? Thank you @karukgirl for your encouragement!

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Replies to "The first three echos are 28 days apart. This was my second echo. I have another..."

That is all great news! I haven't signed any papers since I first signed up. I don't know if you read my post from about a month ago that since I am doing so well on 2.5mg they were going to stop it? My dr and I had a fit and he was able to keep me on the 2.5mg. My LVOT went from 75 to 8. It has stayed that way for 2 months but I am still on 2.5 and I intend to stay on it! I don't want to go back to feeling horrible.