Anyone take new drug Camzyos (mavacamten) for HCM?

It just wasn’t for me but I am low risk hence the reason it didn’t work for me sadly., So glad it is working well for others.

I have improved greatly on 10 mg of Camzyos. I am labeled "severe" HCOM. My doctor wrote ,"impressive results" on my chart regarding Camzyos. I did not feel well when I first started the drug. A nurse practitioner adjusted my metoprolol which made the difference for me. I mention this in hopes that someone else will consider this if they are not feeling well initially on Camzyos. A few days ago, I began taking 15 mg to see if I can improve even more.

Maybe you'll make it to USA...check out Thailand, they have some very good Doctors and advanced technology. Good luck.

Thank you for the link and looked it up (seen it before actually) but minimally invasive is not the same as robotic surgery. With minimal they cut a little down the centre where robotic I believe is done under the armpit. I think it’s only done in the states. Will ask cardiologist tomorrow and meeting with surgeon on 16th May.,

Where do they perform that surgery?

I was told when I was diagnosed in 2010 that it was genetic, however I have not found any other family members. My mother did have atrophib as well as one of my son's.

https:// www. rbht. nhs. uk/ blog/ minimally-invasive-cardiac-surgery-success-story-for-nhs

I have had this 15 yrs and a mild case they say but of course will progress so better late than never. Camzyos could be a game changer for you if yours is inherited. Your call. I am only on calcium channel blockers which essentially are for high blood pressure. Thanks for replying.

I'm not taking any medication currently except high blood pressure medication. I am scheduled for an Echo. And then soon to go on camzyos. My situation is not as severe as yours, but will progress. I am considering surgery If it's done with robotics.

Goodness me such a quick reply...thank you. So young then...Ok I understand a bit more now. I think the surgeon wants to minimally cut down the middle to repair the mitral valve as well which may or may not need doing. I suggested doing the thickening first (round 1.6/1.7 mm to which he said if the mitral valve needs doing too we will have to go in twice. I am on verapamil 80mgs at night and 40mgs am plus 3 mgs prednisolone for aches. What are you on if any? I am getting out of breath after eating and better on after lunchtime. How about you? Sorry for all the questions a big decision coming.