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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 6 days ago | Replies (736)Comment receiving replies
Good morning! I feel the exact same way, being on 2.5mg now. I was only on 5mg for 62 days and was feeling SO GOOD! I was really disappointed to be switched so soon. I definitely feel much better than before I was on it, but yes, more tired and a bit winded. I had my echo Monday. Will meet with the dr. next Monday. Will report what he says. It is so awesome to hear how other people are doing on this journey! 🙂
Replies to "Good morning! I feel the exact same way, being on 2.5mg now. I was only on..."
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Good Morning!
I've purposely been holding off on making any statements about how I'm doing on the lower 2.5mg dose because I wanted to make sure it wasn't just in my head. I certainly had a bit of anxienty over changing the dose because I didn't want to lose how amazing I was feeling, and also recognize that emotions/fear are not reality. I've been on the lower dose for 3 weeks now and while I still feel pretty good in general, I've defintely noticed that I start to get out of breath after about 1/2 mile of walking. Thankfully no chest tightness like before being on this drug, but defintely have lost some of my new found "omgIfeelGreat!"
I'm going in for my next echo on friday so we'll see.