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DiscussionAnyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
Replies to "Thanks for your reply and encouragement, especially about open heart surgery. Like several others on this..."
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.
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?