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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (807)
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@katiekins

Yes likewise, 74 and apparently had HOCM a long time and ur came to light in the gym aged 57 (as I overdid it) and then symptoms began but with meds was fine. I only did this operation (for mitral valve regurgitation) upon advice of surgeon. Hated everything about it at the beginning but tomorrow week 14, am beginning to feel alot stronger. Who knows…. Camzyos is a wonder drug for some but my real problem was the mitral valve hence the operation. Camzyos comes with a warning and may not suit everyone (not trying to put you off but felt amazing for the first week but then headaches started, jaw ache and blurred vision just was not for me. Di you have symptoms? Are you in meds? It’s scary in the beginning but don’t be. Do you know what your gradient is?
Kate

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Replies to "Yes likewise, 74 and apparently had HOCM a long time and ur came to light in..."
joycehocm | @joycehocm | Dec 8 12:00pm

Hi Kate - our conversation is really helpful. The only symptoms that I have are breathlessness and occasional fatigue that come on suddenly after I have been running around all day. I am glad that you are feeling a lot better. Have you been on calcium channel blockers and what was that like? side effects? My doc wants to skip over beta blockers because they are, apparently, correlated with depression which I have had on and off all my life and do not want to fool around with - my meds for that are now perfect. It is good to hear about your experience with Camzyos - scary symptoms but I won't be as alarmed if they happen. The REMS team will be on top of that, I hope. I don't know what me gradient is - will ask doc when I email him later. What gradient is good? bad? range? Thanks so much! Joyce

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