← Return to Anyone take new drug Camzyos (mavacamten) for HCM?

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@nanakpm

Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this site, I was shocked when my cardiologist suddenly blurted out "you need open heart surgery" when I went to talk to her about Camzyos. I am sure there is a better way to share that opinion. She did not recommend Camzyos because it is new. Yes - it does take courage to be in the forefront of trying a new drug. And it is an adjustment for physicians to embrace a new paradigm of treating HOCM. If indeed my kids have inherited the gene, I am happy to contribute to knowledge about a non-surgical intervention. Not everyone has access to surgeons who have the experience and track record of doing myectomies successfully so Camzyos may be a safer treatment for many. I was diagnosed about 7 years ago, having had a bout of viral myocarditis 3 years earlier. Managed on a calcium channel blocker and then added Rythmodan. I am fortunate that I live in a place with world class expertise in HCM (Toronto) including an excellent surgeon who specializes in myectomy. And even more fortunate that my husband, a professor of medicine, saw reference to mavacamten in the literature, and encouraged me to explore it as an option. The doctors at the HCM clinic here were not offering it a few months ago (January), and recommended open heart surgery. but I think they are now offering Camzyos as an option. I don't know how patients find out about it unless they read medical literature, or have doctors who are open to trying it.

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Replies to "Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this..."

How wonderful you live in an area with such great access to HCM experts! And you have an inside track with your husband's expertise. There are several others in this community from Canada as well, who have recently started Camzyos. @hansj for example has done really well. If you get some time, read the posts on here. Hopefully you will learn more from people who are on the same pathway as you.
Viral myocarditis? Yikes!! That must have been very scary 😮 I hope you are doing well now except for HOCM. Has your cardiologist been impressed with your test results? Did your LVOT pressures normalize?

I was blessed to have been referred to a cardiologist who specializes in HCM and is an advocate of Camzyos. That said, when I followed up with my regular cardiologist, who referred me to the specialist, she told that she didn’t know anything about the drug, didn’t understand how it worked, and thought I was headed to open heart surgery. It made a scary decision about whether to take the drug even scarier.

This group gave me the comfort to move forward. I am on 5 day. So far so good. I have not noticed a change yet-positive or negative.