Camzyos improved my gradient but my symptoms are not better

Very similar experience. Started Camzyos 8/2024. After 1 mo on 5 mg, was told that my gradients dropped significantly and the protocol required that my dose be decreased to 2.5 mg. Stayed on 2.5 mg for a few months but wasn't feeling as well as I did on 5 mg because symptoms were still present on exertion. After reading a post on Mayo Clinic Connect regarding a similar experience, I asked for a stress "treadmill" echo (not the routine echo) which showed that my gradients increased upon exertion & my dose was returned to 5 mg. Feeling much better on the 5 mg. Best of luck in figuring it out.

I was diagnosed with HCM with severe LVOTO dec 24
Started camzyos 5mg started feeling good with in two weeks
Got back on my bike and started increasinf mileage 1/2 mile start by the end of the month i was at 5 miles not breaking any speed records. Went back for imaging at 1 month and gradient decreased by 70%
Was given ok to start riding smaller hills and increase mileage got 140 miles that month. Went back for imaging gradient still 38 given ok to do harder hills
Didnt work out to well the harder i push the more the gradient and heart murmur kick in. Was told to back off intensity
Awaiting surgery in June
My advise is take it slow and continue to increase slowly if your able but make sure you are keeping your cardiologist in the loop!

Was surgery your choice or recommended? How reliable is surgery?

Surgery was recommended because of my active life style
The doctor put me on camzyos to get me feeling better after my exercise induced heart failure.
The doctor says im gonna be doing things like i was 20 years younger!

Was surgery open heart??
Were you on bypass?

Surgery was recommended for all of us who did have it. In my case, my cardiologist said that if I did not have surgery, "Your family will miss you." It's not only the shortness of breath when doing physical activities, blood may not be circulating efficiently enough to keep other organs well supplied with oxygen and other essentials, leading to failure. Surgery is very reliable, @hjcram; the enlarged area of the left ventricle causing HOCM is removed. I was 75, I could wish to but will never be able to do things like I did 20 years ago even though I lead an active lifestyle, it's slower and less intense. @brumasterj, you are in good hands and your physical shape will enhance your recovery as it did mine. Now, you may wish to check out cardio rehab facilities in your area, ask your doctor if that will be in your future - heads up - there may be waiting lists as I discovered.

Thanks for the encouraging words and great advice!
I never thiught of the rest of my organs not getting the oygenated blood because of this!
Although the camzyos has been great it has its limitations so i cant get after it on my work outs!
Look forward to being able to do that again:)

It will be open heart next month

All the best!
Please keep us informed on the surgery itself and your recovery.

We are all on the precipice of needing heart surgery. Camzyos is just delaying it. I am grateful for Camzyos' existence. If this had happened to me 3.5 years ago, I'd already have had a septal myectomy. So the hope to stay healthy and responsive to Camzyos is there. But who know if in a few years or longer, it is learned that Camzyos had other effects on our bodies? But it's an existential issue when your heart is in trouble as ours are.