Anyone take new drug Camzyos (mavacamten) for HCM?

Hopefully I’ll have an update tomorrow per my cardiologist

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.

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. 🙂

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.

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?

I am the only veteran in the VA health system countywide that is getting this drug, my case / condition is being reviewed/watched by about 200-300 doctors for potential treatments for other veterans. Cardiologist appointments every 3weeks, ecg’s every 4weeks for the first 6months..
My understanding should this be successful that many vets will benefit and begin to get the same treatment

I have been taking Camzyos for 5 months and now I can walk without being out of breath

The WWII Mine Sweepers had a motto: "Where the fleet goes, we've been!"
That's you! The first Veteran to go. I am very excited for you. Wow, so many eyes on you now...no pressure!
It sounds like they have a good plan going forward. If all goes well, will this be written up in the US Veterans and Military Magazine? Can you picture yourself on the cover? What a great interview it would be!

Yay! That is great news! I will be anxious to hear! Hopefully it will act quickly for you as it did for me and some of the other people in this group! So exciting! 🙂

I lived around 8500 ft. In elevation in Colorado and didn’t have any issues with the elevation. I have non-ischemic cardiomyopathy with a full block and am on several meds, obviously. Hopefully your new meds work and you can enjoy those outstanding mountains! Keep fighting the good fight…