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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 4 days ago | Replies (807)Comment receiving replies
I am 51, diagnosed with obstructive HCM first of this year. Been on Camzyos for 6 months now. I Was also my cardiologist first patient to be on it. Side effects have been the biggest issue. I’m getting better. Have Echo done every 4 weeks. Every echo shows improvement. Problem is, I am improving but the side effects prevent me from getting to feel any better. Side effects are same as what I was experiencing from the HCM before diagnosis.
I’ve consulted with Mayo Clinic and considering surgery. A lifetime of Camzyos knowing my heart is better but never getting to enjoy the benefits is no way to live.
As far as cost. Camzyos does have a program to help with the 8k monthly cost of medicine.
Replies to "I am 51, diagnosed with obstructive HCM first of this year. Been on Camzyos for 6..."
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Hello @tjunca, and WELCOME! I'm glad you found Mayo Connect and have shared your story with the Hypertrophic Cardiomyopathy group. The Camzyos folks are a wonderful resource as each one of them, like you, are brave for trying this new drug and for hoping it helps them live better lives with HOCM. I encourage you read the shared stories and reach out if you have questions. No two people are the same, and therefore, no two results will be the same either. Camzyos is a magical medication for some, and for others it's not helping, it may even hurt them. I'm glad to hear you have consulted with the Mayo Clinic. I did, and it made all the difference in the world to me. I had open heart surgery a few years ago in Rochester and have my life back thanks to the stellar care, expert medical advice and top notch surgical skills offered at the Mayo. Mayo Clinic has the world's top HCM doctors. How long does your cardiologist want you to try Camzyos?