Anyone take new drug Camzyos (mavacamten) for HCM?

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.

Good morning! First of all, thank you for your service! That is really exciting that you will be the first veteran to take Camzyos. I was really nervous too. I read as much as I could, joined this group etc. I was feeling so awful. My shortness of breath was totally debilitating. I am 58 and have always been very active. HCM stopped me from doing many of the things I love to do. Although I was scared, I was also hopeful that this could be the answer to help me feel better. I have now been on Camzyos for a month and am having my first ECG this afternoon. It is honestly a miracle what this drug has done for me. I am back to being able to take walks and not worry even walking from place to place. No more dropping off at restaurant or store doors, because I couldn't walk very far. My only side effects have been feeling kind of dizzy at times. I am getting my life back! I wish the same for you!

Did you find out?

Hello
I am a 59yr old male 6’4 260lbs, I am going to be the first veteran in America to get this drug through the VA, many cardiology departments across the globe are watching my case to evaluate and establish for other veterans. I’ve seen war, but the warnings on the packaging is making me nervous. Any advice?
D

This is such good news! I just saw my cardiologist today and came away feeling very lucky. Some of his Camzyos patients are not getting noticeable results - he feels that I am really fortunate that I am doing so well on this medication. Nice to read your updates Kelli 🙂