Anyone take new drug Camzyos (mavacamten) for HCM?

Yes, I’ve been on Camzyos for a little over a year. My initial dose was 5 mg but when I started experiencing some shortness of breath, it was increased to 10 mg. Last echocardiogram possibly 2 1/2 months ago had no gradient. I see there’s some discussion about the hereditary relationship to HOCM. Many times it is hereditary and sometimes it’s not. No one in my two generation ancestry ever had this disorder and when I completed genetic testing it was negative for the disorder. I hope you do well!
Bruce

@hopenr wonderful. My Cardiologist is Dr. David Raymer.

I was on 5mg for 3months. My gradient improved the first two echoes. The third month my EF went from 65 to 30 they immediately took me off medication. If I rebound they will try a smaller dose. I am frustrated. Have any of you experienced this?

I started Camzyos in Aug/2024. After the 1st month, my gradients decreased too much too fast, so dose was reduced to 2.5 mg. After a few months on 2.5 mg, I requested a stress echo which showed my gradients increased with treadmill exertion. I was returned to 5 mg but my EF slowly dropped to around 51 and I felt like I had little energy. So dose was reduced this month to 2.5 mg. I have been feeling much better on lower dose. I still find high heat & humidity difficult and and eating too many carbs - anything that causes my heart to work harder. However, I do not experience the scary squeezing or tightening of my heart nor the pain down my arm.

I was recently diagnosed with HOCM. I get tested tomorrow at Mayo AZ! Need to know what Medicare Part d covers Camzyos. Without coverage the medicine is cost prohibitive (almost $100,000 a year).

I been on it since May 2025.. but my HOCM was just diagnosed in April 2025. I feel better than without it. It was helpful but I need a septal myectomy. It is a personal choice, do research, write.qiwsrions down and discuss questions with cardiologist. ask what are other options and make the decision that best suits you and your needs.

Hello @bocellibonjovi71, it looks like this is your first post here on Connect, so Welcome!

That is pretty sound advice you have given to others. It sounds like you have progressed quickly and Camzyos did not help you beyond feeling better than without it.

As you suggested, doing research and asking questions and learning all you can about HOCM is all good...but making certain you are at a COE (Center of Excellence) is also of great importance.
This surgery is so precise, that your surgeon needs to be an expert.

Have you done your research? May I ask where your septal myectomy will be performed?

@karukgirl at Mayo in Jacksonville.

@karukgirl that's why I chose mayo clinic in the first place

@bocellibonjovi71 If you don’t mind me asking, what does your septum measure?