Anyone take new drug Camzyos (mavacamten) for HCM?

@dconner Hello, again, @dconner! I see you posted here as well as in the "Introduce Yourself" thread. I am really hoping Camzyos helps you, too, because HCM is getting in the way of you living the life you want. I know that Debra @karukgirl pointed to the blog on Camzyos. Have you also been learning as much as you can about HCM? The knowledge helps us better understand what our doctors are explaining and helps us ask our best questions. Here is an article to read: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. I cannot give first-hand comments or share experiences because Camzyos was in the testing stage when my HCM needed medical intervention. Yes! Do keep us posted!

Hello, it took less than 2 weeks for me to be approved for the drug, and with assistance my co-payment is $0! My cardiologist is at Emory in Atlanta, Ga.

My prescription for Aficamten was just approved. First payment $2,000. Hoping to be able to live with the side effects. I’m wondering what others have experienced.

@carolinca hello! Even though this thread is technically about mavacamten (Camzyos), I'm betting there's a ton of people on mavacamten who will be VERY interested to hear about your experience with aficamten - especially those who have not had the best experience on Camzyos. Please keep us advised about it. Good luck!

Thank you! I’m relatively new here. Is there a different thread related to Aficamten?

@dconner
I was also diagnosed in December and am 65

After 3 months on camzyos my side effects were horrific and I was basically unable to function (was a healthy active person prior )

Having septal myectomy end of the month

I’m not a believer in the camzyos treatment. It’s like a roller coaster and you end up back in the same place.

I have heard that’s it’s worked for some but not for me

Good luck

@carolinca welcome to the forum. I think the link below will take you to a discussion thread relating to aficmaten (Myqorzo). There are lots of other mentions of aficamten in the HCM threads, especially from people for whom mavacamten (Camzyos) hasn't worked. I got lucky with Camzyos as all of my symptoms completely disappeared in just 12 days, and I have not had any negative reactions other than a minor increase in blood pressure that was treated with a tweak to my blood pressure meds. Like any medication, some folks have not responded well to Camzyos - it didn't work well, or it caused unacceptable side effects, or for some, it actually made things worse. See the comment from @cindyw9999 as just one example (sorry to hear it wasn't helpful for you Cindy.) Sometimes the best solution may be myectomy or ablation. We are all different so having another treatment option (aficamten) is exciting news even for Camzyos users like me. Please do keep us posted as you begin this journey.
https://connect.mayoclinic.org/discussion/myqorzo-has-anyone-tried-this-new-alternative-to-camzyos/