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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 1 hour ago | Replies (775)Comment receiving replies
Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the echo showed I was still getting benefit despite not feeling as amazing as I did on 5mg. The starting dose had brought me right back to "normal" (no wonder I felt so great), protocol requires that they lower it (arg!). I've been on the lower dose for 4 weeks now and while I'm doing okay I've started logging my returning HCM issues (light headed, out of breath) as they occur. I've had to curtail the long walks I was taking Charlie on. The doctor will meet with me in 3 weeks to discuss further, he said he's not opposed to going back to 5mg but is being super caution as he is concerned about me having too much and relaxing my heart too much. So I've gone from feeling terrible for the past 2 years, to feeling amazing for a couple months, and now feeling just okay. I'm going to hang in their for a while but now that I've had a taste of normal life again I'm not willing to put up with a sedentary life style long term, at some point I'll give up and just opt for the surgery and a permanent fix.
Replies to "Well, here we go... I'm stuck at the lower 2.5mg dose for now. Doctor said the..."
Initially I thought I felt better with the 5mg dose but now entering my fourth week taking 2.5mg I feel great. I am able to walk a few miles even in the heat (early in the morning). What I am now not feeling which I did feel with the 5mg dose is sudden fatigue to the point of quickly nodding off. For me, it seems to take about 3 weeks for the effects of each dose to be consistent. My next echo is in a week. I am hoping my LVOT is at 20 or above or there will be a lot of discussing on my part. Since this drug isn't a cure but a prevention, I would assume that being taken off this drug (if my LVOT is below 20) would put me back to where I was before Camzyos.
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Hi Hans-I was not feeling as well either, on the 2.5 vs. the 5 and have now turned a corner. I am feeling really good. I have now been on the 2.5 for 4 weeks as well. My dr said the same thing about the worry about my heart being relaxed and weakened. It is good to know they. can override the protocol if they feel it is necessary and safe. I agree, now that I have experienced feeling well again and being able to resume all of the activities I want to do, I am not going to put up with being taken off of this! 🙂