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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
Thank you so much for your reply. He finally called me with the results of my ECHO.
He said it looked better than the previous one I had done in Montana. I left a very good COE to make this move.
I was on Camzyos 6 days before this ECHO…. I don’t feel it works that fast. He nor the staff knew what/how to set me up with REMS correctly as they only had on person on Camzyos before he prescribed it.
He is in a clinic with other Cardiologists.
I will check for a COE!
Thanks again you have helped!
Replies to "Thank you so much for your reply. He finally called me with the results of my..."
Hi @montanamoon and welcome. I'll just chime in here to tell you that I had progressively work oHCM symptoms over about 17 years. To the point where I would have to take 2 breaks going up a single flight of stairs, couldn't bend over to tie my shoes without palitations, dizziness, chest pain,..... After 2 (yes, two) days on Camzyos I was noticing "hey, that should have hurt a lot more... but after just 2 days, it must be in my head." By day 12, I had NO symptoms whatsoever. So for the lucky some of us it works hard and FAST. Maybe (hopefully) you are one of us. Keep the faith!
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Mayo Clinic Rochester is the world's leader in HCM/HOCM and the treatment for it. It may mean a plane trip, but you are worth it! I'm glad to hear your echo showed improvement, but I would still encourage you to be on the lookout and watchful over your own health...you know you better than anyone else 🙂