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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: 11 hours ago | Replies (782)Comment receiving replies
Can anyone provide information on if they know the long terms of this drug? Do we take it forever. I started it 5 weeks ago and my heart is feeling better but I’m more tired, dizzy and nauseous. I think it’s dropping my already low blood pressure. Any insights would help. Thank you
Replies to "Can anyone provide information on if they know the long terms of this drug? Do we..."
I experienced dizziness about 3 weeks into it, for 2 weeks, but the dizziness is gone now, so hopefully that will happen to you too. I have been tired too, but am not sure if it is because I am a teacher and the school year is wrapping up and everything is kind of crazy. Can't wait for summer and hopefully fatigue will disappear. 🙂
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Hi @klima12
Camzyos is a long term drug used for patients that respond to it. It's working for me and is used instead of the surgery which would perform a septal ablation. It's not a cure, but it greatly reduces the symptoms I was experiencing. If you stop taking the drug your symtoms return.
I experienced a prescription refill communication mix up with my doctor at the end of April and was off the meds for 5 days, and by the 5th day I was having issues again. Everything got sorted out and I'm back on but it took a couple days to feel really good again.
Before being on Camzyos, I would abort my trip to the mall if I couldn't get parking close enough to the entrance to which ever store I was trying to get to. Taking this drug forever is certainly easier than going through open heart surgery.