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DiscussionIs Camzyos effective long term?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Oct 22 5:45pm | Replies (41)Comment receiving replies
Replies to "Hi @par4rosy et al. When I first saw this post, I thought the question was asking..."
Thanks your response - I will see my cardiologist this week and see where it takes me. He has never mentioned AFIB so far.
It’s just that I did so well for 3 months on 5mg of Camzyos that I could not believe how overnight I could feel so bad. I feel better today but very perplexed going forward as don’t know what the next day will bring.
Thanks for sharing this story about your Mom. I sure hope the cardiology researchers pay attention to this forum. Invaluable information.
To the question about Longterm effects of Camzyos, my understanding is that it is too soon to know.
My experience is that I feel 90% better. I pushed my doc to increase my dose because my gradient wasn’t coming down. I paid for a pharmacogenomic test (not available in our publicly funded health care system in Canada) and learned that I’m a rapid metabolizer of Camzyos. I’m nowon the highest dose - 15mg - and feel good. And my gradient dropped from
139 to 58.
I’m grateful every day that this drug is available. I have my life back.
There is ongoing research on the next generation of mavacamten. So I’m hopeful that we will all benefit.