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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 17 hours ago | Replies (775)Comment receiving replies
Hi there @gunnerman55, while we wait the hear from those who are taking Camzyos to answer your question, let me welcome you to Mayo Connect. It sure seems like PVCs are common to all of those who suffer with HOCM. I know we are all different, but we all seem to have a lot in common too. I had terrible PVCs and SVT before I had my septal myectomy. They are pretty much gone now, but I still get in the fast lane, and go well over the speed limit, even three years after surgery. The PVCs are gone with surgery. There are many stories here on Mayo Connect, and I hope you have a chance to read some of the stories from others just like you. When were you diagnosed with HOCM? Have you started taking Camzyos yet or are you still waiting to start it?
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Hey Debra, I was diagnosed about a year and a half ago. I was first given beta blockers , then beta blockers and calcium channel blockers, then I was given double the dose of both, those caused my heart rate to dip into the 40's while sleeping. Then I was given disopyramide and that felt good for a few days before again my heart rate dipped into the 40's along with feeling very weak and blurred vision. All along I was suffering from PVC's. Now my dr just prescribed mavacamden and I'm waiting for insurance to approve and for me to get the meds. My symptoms are always at rest. I can run up some stairs fine, but if im laying down at night I lose my breath and get nasty PVC's all night. It's terrifying and I feel hopeless sometimes. Just wondering if I can get rid of this arrhythmia with mavacamden. I haven't read about this specific issue on these forums. Do you ever get chest pain after the surgery? are you on any meds now or have you been able to get off everything? what was your ejection fraction prior to surgury? Now?