Anyone take new drug Camzyos (mavacamten) for HCM?

Hey @starbuck41, thanks for sharing your information here. I'd like to thank you for your service to our Country as well. The VA is an interesting institution in what they chose to support or not support. My dad was a WWII veteran, serving on a mine sweeper during the war. I had many encounters with the VA taking him to our little center for all sorts of things. I hope the best for you beginning this new drug. Following some of the other folks here it sounds very promising. It takes courage to try a new drug not knowing how it may affect you. It sounds like from the others on here there is a little transition in the beginning. High elevation is very hard on HCM people, so there is that too. The drug was not approved yet when I had my surgery, but I can tell you this...I would have liked to have had a chance to at least to try it. I can also tell you that nobody, no, not one person, would want to have open heart surgery, but if your choice comes down to surgery or living half of a life because of HCM, choosing surgery is the best choice. I had the best care on the planet at the Mayo Clinic in Rochester. I'm only mentioning that because should the Camzyos end up not being your friend, not to fear surgery. Have the VA doctors got a plan for close follow up? You mention that all eyes of the VA are on you and your doctor, will they be following your doctors recommendations?

Hey y’all,
Tomorrow is the big day, they are FedEx ing my meds tomorrow 5mg. As all eyes of the VA are on me and my Dr, I’m hoping for much success for me and those that follow. I’ll post every few days and update all effects and effectiveness. I currently reside in Colorado altitude is 6700 ft.

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. 🙂

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!