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

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@karukgirl

Rebecca/@elmore71111, Welcome aboard! I am so happy to hear that being able to read about all these shared experiences has helped you make decisions about your future. It's a wonderful place, full of so much information. I know it must be very emotional thinking about not only having HOCM, but now needing to begin using a new drug that hasn't been around very long. If you have been reading on here, you probably have read that a lot of members have had terrific results that have changed their lives. Some have not been so lucky. I hope for you, that you are able to tolerate Camzyos and get your life back. It is really important to be followed by a doctor who is experienced in treating HCM. Do you know if your doctor is experienced in this disorder? Have you started on Camzyos?

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Replies to "Rebecca/@elmore71111, Welcome aboard! I am so happy to hear that being able to read about all..."

I truly have such a wonderful team in place, but it took a very long time to get to a place where I can say that. My doctors are so thorough and careful and I feel so blessed to have each of them. I am very scared about starting the new medication, but for the first time, I feel hopeful, I feel like a plan is in place with a backup plan as well and for so long I felt like everyone kept telling me all the dangers and I heard many ‘I don’t knows’, I kind of felt like I was waiting to die, now I see the wheels spinning and movement is happening, so while on one hand I am terrified, on the other I am so hopeful and excited. I just received the order for the camzyos on Tuesday and they told me that it will take about a week or two before I have it on hand, with getting insurance approval and all. So I haven’t started it yet, but hopefully very soon! 😊