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

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@joanallione

I just wanted to report that I was very nervous about getting on CAMZYOS but I did it and I have been on it a month now and I feel so much better. Then today after my first echo, I got the news that my gradient had gone from 176 to 36. Can you believe it? I feel like I’ve really received a longevity boon. My heart doesn’t hurt when I walk up hills. it doesn’t hurt at all in fact before it did frequently I felt to kick in the first night. I was lying awake and all of a sudden, I felt something open up in my chest and then I realized it was my heart, relaxing. I know it doesn’t happen that quickly for everyone, but it did for me. I am feeling incredible gratitude to the researchers who invented this and the doctors who have been doing the trials and all of you thank you for your support and this blog has been really helpful to read. I will keep checking in With any changes or developments. I have no side effects at all. I did have a strong heart to begin with the doctor told me I was a strong beat. I think people with a weaker beat. Have a harder time. Blessings abound.

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Replies to "I just wanted to report that I was very nervous about getting on CAMZYOS but I..."

Hi all - I am not replying to anyone in particular - can someone tell me how to just do a post without using "reply?" Meanwhile, I just got back from Hopkins and a consult with the cardiologist. I got diagnosed with HOCM about 6 months ago and have had a heart biopsy to check for amyloids and all the other typical tests. My stats are "average" for our condition. The doc put me on verapamil and jardiance and I have felt terrific since. I still have some breathlessness but my energy level is incredible. He says that unless the severity of my symptoms change - and they may not - I won't have to move onto Camzyos - which would be the next step in my case. I just wanted to let everyone know this because this protocol might help for others when Camzyos doesn't help or just when you may be waiting for a procedure. The breathless spells come most after eating so I'm hoping I can get a handle on them with smaller meals. I don't have any other symptoms now. Thanks all for your wonderful information, sharing and support!