Camzyos improved my gradient but my symptoms are not better

It would be worth asking from what i was told by the tech that does the echo, to be approved for the next prescription of camzos my gradient needed to be above 30
So with a valsalva i was not getting there but as soon as i did squats it got me there
Good luck with your treatment

Thanks, likewise!

We are on a similar path...started Camzyos in Jan at 5mg, then the put me to 2.5mg, then off it a month, then back on. After consulting with a surgeon (Dr. Swistel - NYU), I decided to go that route instead. Seems like our condition is mechanical and the myectomy and valve repair just seems to make more sense. And, as you mentioned in another post, I'm not comfortable not knowing the long term effects of Camzyos. I've been off it for about a week...stairs are already getting harder. My surgery is June 25th...I think you are about a week ahead of me. Positive thoughts being lifted for you!

Been off camzyos now 17 days! Doing pretty good so far as far as walking around im not riding my bike anylonger went out for a ride after being off camzyos 5 days and was struggling just to do 1 1/2 miles!
I have started getting tightness in the left side of my chest! My mayo cardiologiat has asked me to please take it easy, he said we put you on camzyos to get you stronger before your surgery day and we dont want you to relapse back to another heart failure by working out too hard!
Yes my surgery day will be on the 19th
I wish you the best and hopefully we heal quickly and get back to doing the things we love!

He did my open heart surgery in 2016 at the age of 33. They say he is the best and seeing how my surgery was supposed to last 3 to 4 hours but I was done in 1.5 hours he is fast! Like all great surgeons, not much of a bedside manner tho.

I am now 42, just about to start Camzyos to delay my 2nd open heart as long as possible.

Thanks for the encouragement If you dont mind asking why the first surgery and why a second?

Check into laparoscopic HCM surgery if you do have to have another heart surgery.

Hi, I had my first ECHO in Oct 2025, was started on the REMS program at 5mg due to LVOT 214, at one month I felt great and had my first Camzyos ECHO, LVOT down to 12 and EF dropped from 77 to 67 so I was decreased to 2.5mh, at one month on that dose my EF was down to 57 which shows rapid decreasing so the stopped camzyos, all symptoms came back with a vengeance after 1 week, they started back the 2.5mg, and I had my ECHO today, numbers were good but the symptoms are all still there. They didn't really have an answer, they just said continue 2.5mg and do another echo in 8 weeks this time, as they presume I just need to wait as it takes some time...... Last time they said I am a slow metabolizer, this time I am slow responder. I think we are lab rats. I am going for all the tests at Cleveland clinic the 20th of this month, I cannot wait. Teri March 2, 2026

Im in the same situation. I just talked to the Heart Failure Clinic today and they didnt seem to have an answer except "yes, that is a hard situation to be in", I am going to Cleveland this month (20th) to try to get them to take over my care, which is also what my cardiologist wants. The the more I read the more it says the symptoms can take up to 33 months to get better..... this sure doesn't make our decisions any better. But I am thinking about is that on medication we have hope to getting back to normal activities, the surgery can mean never getting back to the things you used to do. Please read about open heart surgery side effects, I am going to study it before I go to Cleveland, what I have read so far is a bit scary. Good luck and lots of prayers, Teri

@cash298 I am wondering which comment you are responding to. Camzyos helps some greatly and others not at all, we are all so different. Please explain the surgery side effects you read about and where you read about them that prevent patients from going back to what they used to do. The surgery is the gold star treatment for HCM done at a COE like Mayo Clinic where the success rate is 99%+. I had a septal myectomy in 2022 at age almost 76 and still walk 10k in 2.25 hours, ride my bike, I even went to the Galapagos Islands to hike, snorkel and kayak and also went to Machu Picchu on the same adventure in 1/2025. Please do read the posts under the Connect topic What I Learned From My Open Heart Surgery." It's a scary thought to face any surgery, talk to your doctor, learn all you can and ask every question you have. We are all so different, each HCM patient has their unique story.