Anyone take new drug Camzyos (mavacamten) for HCM?

Welcome to the group @rover27. The first week I felt nothing. Then during the second week, I started to feel lightheaded, more fatigue, more shortness of breath upon exertion, increased heart rate, and higher blood pressure - I felt crappy! I contacted my cardiologist and after some discussion he sent me for an echo. The results were fine. He suggested that it takes time for the medication to build up in your system. He also said we could discuss also taking Metoprolol.
The lightheadedness is gone. I still feel fatigued and I am still short of breath upon exertion. I am on day 20.
Are you taking any other med that may be interacting with the Camzyos? I suggest calling your cardiologist to let them know your symptoms. Trust but verify.

Welcome to the group @rover27. The first week I felt nothing. Then during the second week, I started to feel lightheaded, more fatigue, more shortness of breath upon exertion, increased heart rate, and higher blood pressure - I felt crappy! I contacted my cardiologist and after some discussion he sent me for an echo. The results were fine. He suggested that it takes time for the medication to build up in your system. He also said we could discuss also taking Metoprolol.
The lightheadedness is gone. I still feel fatigued and I am still short of breath upon exertion. I am on day 20.
Are you taking any other med that may be interacting with the Camzyos? I suggest calling your cardiologist to let them know your symptoms. Trust but verify.

I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days have felt not so good. Was wondering if others had similar symptoms. I've got the dizzy, spacey, somewhat disoriented type feeling. Not much energy. And a racing feeling in heart. Almost like an anxiety-type feeling. I've noticed that feeling before, but mostly when lying down on my left side. This is there all the time. My heart rate seems normal. Would appreciate any feedback.

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.

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.

I just started 5 mg Camzyos on Tues. night(June 27th) and for the last 3 days have felt not so good. Was wondering if others had similar symptoms. I've got the dizzy, spacey, somewhat disoriented type feeling. Not much energy. And a racing feeling in heart. Almost like an anxiety-type feeling. I've noticed that feeling before, but mostly when lying down on my left side. This is there all the time. My heart rate seems normal. Would appreciate any feedback.

Good Morning @elmore71111, I was lightheaded (but I did not feel faint), more fatigued than usual, and experienced more shortness of breath upon exertion. The combination made me feel generally crappy. The lightheadedness was intermittent. It lasted about a week, starting on a Saturday evening. My cardiologist sent me for an echo on the following Friday; so, about a week after the start of my symptoms. To be on the safe side I didn’t drive during that week. Now, I feel better; but, I am still fatigued. No lightheadedness and the shortness of breath is better. I have two flights of stairs in my house - 26 stairs in total. Navigating the stairs brings on the shortness of breath.

Everyone is different. So you may not have any symptoms. Mindset is so important to your health. So stay positive, enjoy life, because tomorrow is not promised.