Anyone take new drug Camzyos (mavacamten) for HCM?

I hope you get good advice on your next steps. I stayed on Camzyos against my doctor’s recommendation to give up and have surgery. I was feeling so much better and had no side effects, even though my gradient was not improving. I was able to get an enzyme test through my family doctor to see how I metabolize the drug. Seems I need a higher dose. Went up to 15mg and finally the gradient went down by 50%! I’m praying this continues. I wish we were part of a study on longer term effects of Camzyos. I want to
be optimistic but always wonder what’s next! A new drug, afacamten, is awaiting approval. For people who don’t respond well to Camzyos. Maybe your doc knows about it. Hope you feel better.

Thank you for your good wishes I am sad it didn’t work for me. That’s life.

My Doc says my heart is running well, however I do get light headed a little more often and heart flutters more often. For me it's worth the trade off. I do not know yet how it will effect me when I get more active.

May I ask what side effects you are experiencing? I am not feeling well on it either but my dr keeps saying everything is fine because my heart is better

Yes you may, terrible unbearable headaches as if my head was in a pressure cooker, jaw ache and not going to the loo to spend a penny. Stopped it and started again but they started again so I think surgery is the way now but feel worse off the drug now. Oh well wish you all well. Too bad it didn’t work for me. Is anyone else in here that takes verapamil and prednisone?

What are your side effects if I may ask? Thanks.

I also have a head that feels like a pressure cooker. I’m super tired and dizzy. Very low BP and not sleeping.
Thank you for getting back to me

Thank you for replying. What are you going to do come off the? I actually feel worse since I have stopped them, I feel if has affected my heart not in a good way. At home resting waiting to see what my cardiologist says. I now am so out of breath I didn’t have that before and tummy swells after eating. I really wish I hadn’t taken them. Good luck

Hi I was just wondering if you meant mavacamten not afacamten because that is Camzyos. It is sold under the brand name Camzyos. I have been in it for 4 months now. My gradient do go down for month 2 and 3 but back up on month 4 so now they are increasing me from 5 to 10. I had terrible dizziness for awhile but it finally calmed down after about a month. I hope it doesn’t come back with the increase dose. Is there actually another drug awaiting approval? Glad the 15 is helping you now. Did you have any new side effects?

Not sure what your question means but to clarify : Camzyos is trade name for mavacamten. My understanding is that aficamten is the drug awaiting approval.

I’ve been fortunate to have no side effects from
Camzyos.