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

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@boatsforlife

Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same as every other new medication. The FDA will have evaluated Camzyos and decided that, based on scientific evidence, it is worth approving. As to your other comments about false hope and the drug not doing anything for people with HCM, I would have to differ. Certainly there will be some people who don't respond well to it, but that is the same with every medication. Personally, I could not tolerate metoprolol, but it work tremendously well for many (most?) people. Using myself as the example again, Camzyos took me from being unable to climb stairs or even bend down to tie my shoes, and completely cleared up all of my obstructive HCM symptoms. As I said, the way I have read the hundreds of posts in this thread, Camzyos seems to be very beneficial for most of the folks here. Of course if you meant that it doesn't do anything for people with non-obstructive HCM, then you are correct. Unless something has changed recently, it is ONLY prescribed for obstructive HCM (oHCM or HOCM), and even just for a specific sub-set of those folks, and not for non-obstructive HCM.

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Replies to "Hello again @don69. The drug has actually gone through very rigorous testing and approvals the same..."

i’m curious about why you could not take Metroprol?
I’m on Metoprolol XL 25 mg. twice a day.
The cardiologist wants me to go to once a day for two weeks and then try to discontinue it in a month.
I don’t have shortness of breath, chest pain, etc. but I do have a lot of fatigue.
would appreciate anyone’s feedback that is on this medication.
The Camzyos has brought my numbers down to normal.

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.
This support group has been an endless source of information and encouragement.