Anyone take new drug Camzyos (mavacamten) for HCM?

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

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.

I started Camzyos a few weeks ago and immediately felt much better (feel ok most of the time anyway) started with terrible side effects headaches etc…. Came off for a week and restarted for several days and side effects returned. Now free of the drug but feel absolutely terrible. I am worse than before and now am looking at surgery as could not get up small hill yesterday Which is normally fine for me. Thus drug has changed something in me. Very very upset but glad for all you lucky people that it is working for.

I am not a physician. Only a HOCM patient and a 2 year user of Camzyos with great results. I would schedule a consult with a neurologist to get a different out of the box perspective on your strange symptoms.
That is:
Two short, but intense episodes over 2 weeks. (not all the time).
Transient episodes (2 to 4 min. total) with pain over your entire body at the same time (central nervous system?).
No such problems during the period you were on 5 mg dose.
Before giving up on Camzyos, I would both see my cardio and consult a neurologist for evaluation. Get the two specialists to talk with each other. Maybe you and both doctors ( and us) will learn something helpful!

Next step to see cardiologist beginning of April if not before. So very disappointed about this. Has anyone else had similar outcomes? I can’t be the only one? I am wondering if it interacts with other drugs I am on. So sad about this. Oh well.

How utterly disappointing @katiekins. I'm so sorry you had to experience these terrible side effects. I would be disappointed too. What is your next step? Have you had a chance to discuss this with your cardiologist?

Sadly I have had to stop as suffered severe side effects. Very upset…. Severe headaches, jaw ache and not going to the loo (urine) so very very disappointed! Back to the drawing board.

Joint paint on Camzyos? Had my Camzyos increased from 5mg to 10mg just over 2 weeks ago and have had 2 bouts of really peculiar joint pain. Sitting idle, and over the course of about 1-2 minutes every joint in my body - spine, knees, knuckles, jaw,... - builds from zero to almost crippling pain and then suddenly subsides just as fast. Has never happened in living memory. I can't imagine it being related but the only thing different is the move to higher dose Camzyos. Sound familiar to anyone?

That’s wonderful news. Kate

Mavacamten is highly regulated by a program called REMS. They do not, to my knowledge give to regular pharmacies or mail orders. I have mail order and they would not do it. You have to get it from a "specialty" pharmacy...I got mine from NYU Hospital and I know that any doctor that is on their program has to abide by their rules. Strict guidelines for this drug. They only dispense 30 pills at a time in conjunction with a specialized pharmacy. Regular echos as well. I started Mavacamten in February of 2023 unless things have changed. Not all cardiology doctors are in this program. I had asked my regular cardiologist and he said he did not participate. So even though other countries have approval for this drug, you would have to find a cardiologist who participates. I am sure that Camzyos has thought of this.
I hope this helps. Good luck.