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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
Hello All, I've being following this group since July. I start the Camyzos this coming Tuesday. I was diagnosed with HOCM in 2016. Thought the shortness of breath was age related and fatigue also. This June had an episode with dehydration. That's when I was introduced to this therapy. My apprehension or fear is countered by my excitement.
How about the genetic component of this condition. Have any of you done any genetic testing? I have and my kids will be soon. So many unexplained breathing/heart conditions with my Mom and her siblings...
Replies to "Hello All, I've being following this group since July. I start the Camyzos this coming Tuesday...."
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Hello @lakehappy, and a warm welcome to Mayo Connect! I was a stalker on here too when I first joined, so I am happy you feel comfortable enough to jump in! You have come to the right place to find information about Camzyos. There are some incredible members here that have shared their journey with all of us, and I hope as you begin Camzyos this coming Tuesday, you will feel free to ask them your questions. @kelliw and @jaymaysea are Camzyos champions and have shared their ups and downs honestly and openly with the group.
There is a strong genetic link, have you read this? It's very informative...
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
HOCM/HCM is so difficult to diagnose because the symptoms mimic so many other heart conditions. Starting on Camzyos I would expect you to be apprehensive, it's an experimental drug, but there has been a lot of success, and also some failures. I think you are very brave to try it! I had open heart surgery at Mayo Rochester, so I didn't get an opportunity to try Camzyos, but I can tell you the Camzyos group is a wealth of information. Have you had a chance to read some of the stories here in the Camzyos group?