Anyone take new drug Camzyos (mavacamten) for HCM?

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.

Hopefully I’ll have an update tomorrow per my cardiologist

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

Hopefully they will come soon! 🙂

Unfortunately not yet, the VA sometimes is slow to get meds out, but I’ve had 5-6 ecg’s in the past 18months, Dr and myself have filled out all the necessary forms..just waiting on meds to arrive.

Good morning! Did you start Camzyos yet? 🙂

Thank you, Debra! Every day is definitely a gift. I have always been a caring person, but this experience has really given me more empathy for other people with health issues. One example is, my daughter and I were touring President James Polk's house, in Columbia, Tennessee, and this man needed a chair to sit in, in every room and boy could I sympathize with him. I am on schedule for all of my echos and follow-up appts. They haven't done a chest x-ray. I will ask about it. I have been on this program now for 5 weeks. Have a great weekend!

That is fantastic news @kelliw ! What a great feeling it must be to get positive news that everything is going in the right direction and not only that, but you feel so good too! I love how you say you are getting your life back. I completely understand that comment. It's like you have been given the gift of being you again, before all this came along. I hope you keep sharing your progress with the group. Your experience can help others going through this too. Are you on a schedule for routine Echo exams? Do they also do a chest x-ray to check your heart size?

Happy Friday! I had my Echo last week, and my follow-up appt. yesterday. Everything is going very well! He said my lungs are now functioning normally, because of the help my heart is getting from the Camzyos! That is why I am feeling so good. No more dizziness this week. I am parking further away from places I need to go, to get more walking in! Yay! I am getting my life back! I hope you are all doing well too! 🙂

Hello -

I was also nervous about this new medication, which led me to this Mayo clinic forum. I did as much research as I thought was useful, and made the decision to try it. Everything has gone really smoothly for me and the doctor has been very rigorous about ECGs to make sure all is well. I have had excellent results and would certainly recommend this medication. I think that the cardiologists are monitoring patients very thoroughly.