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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
I started Camzyos three weeks ago after lots of research and discussions with my kids. I am on the smallest dose. 2.5 mg, to start. In three weeks, I am noticing a slight improvement in my shortness of breath and am anxiously awaiting the Cardiogram next week. I am a very active 86-year-old and I am stubborn, so I have not let my HCM symptoms slow me down. It just takes longer to do things!
Replies to "I started Camzyos three weeks ago after lots of research and discussions with my kids. I..."
Hello there @nccarlee, and a warm welcome to Mayo Connect. You've found a wonderful support group here in the Camzyos group. These people are so terrific in the way they share their own story in the hope that it helps others. You can learn a lot from them.
I like that you are stubborn!! That's a good thing (and bad thing too!). It has helped you push through and not quit. But do be careful and listen to your body as well.
Is your doctor educated in HCM and Camzyos? It is important that they are, and for you to learn as much as you can too. You need to be your own best advocate.
As a very active 86-year old, what are some of the things you do that you enjoy? It's probably a little too soon to notice a big improvement in everything HCM affects, but have you found even one thing is different? Better?
Wonderful to hear you are persevering. I’m 70 this year and having knee surgery next week. I just am hoping the anesthesiologists read about Camzyos and my HCM!!
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Stay on it! I have improved greatly on it, and am up to 15 mg because I have severe HCOM. I just had an ECHO and my Valsalva was 19; when I started Camzyos 9 months ago, it was 86! Normal is less than 30. It has changed my breathing and activity level greatly. I am so grateful!