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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
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?
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HOCM is so weird! I hear what you are saying...how strange you can run up stairs and be fine but at night or rest, BAM! I had good days when I thought I was fine, and then other days I felt like I was going to pass out, or had chest pain just bending over to put my shoes on.
I was on probably five different beta/calcium channel blockers before and after surgery. They didn't like me, and I didn't like them and last year, working through the patient portal at Mayo, Dr. Ommen told me to just stop. So I did, and I am fine now. I worried about going off them, because after surgery my heart rate was always high. Resting at 90. But I think the healing part, which takes awhile, finally settled things down to where I could go off them. I still tend to run high, and the heart rate goes up pretty fast...but I'll take that and be fine as long as I don't have to take meds. I'm on a baby aspirin for life. That's a nothing burger to me.
I remember before surgery my heart would do so wild stuff at night. The bed shook because it was working so hard. I could feel the pauses (which scares you) the crazy rhythm.
That was a lot of words (I'm known for using a lot of words) but for me...the surgery made all that go away. No more chest pain. No more meds. My EF resting was around 82? I can't remember. But during stress, like what they did in surgery, it was 253. Dr. Dearani said I had a severe case of HOCM...which was so oddly comforting to know, because I didn't look that bad on paper. I knew how I felt though. I was afraid I was going to die sometimes. I was very athletic and active prior to HOCM robbing me of my life. I didn't want to die in my sleep or out running the trails.
I can't speak to the effects of Camzyos, so hopefully one of our amazing HCM/Camzyos people can answer? Do you know how long before you will be approved? Is your doctor familiar with HOCM and Camzyos? How is your overall health besides the HCOM?