Camzyos improved my gradient but my symptoms are not better

Been on 5mg of Camzyos since November 2023. I had my 6 month ultrasound yesterday and my gradient is almost 0. Other than being a positive thing, I’m not sure what it means (a hill to be climbed by my blood flow through the left ventricle?) but Camzyos has done a brilliant job.

I just was not willing to be on Camzyos the rest of my life, after my insurance agreed to pay for it for 7 months the process was a nightmare, also wondered what I would do in 7 mths or when the REMS program is over? It’s 9000$ a mth ??? Plus the problem isn’t fixed, it’s masked by slowing you heart down and making it work less. Yeah, that solution was not right for me, I wanted it fixed and I went to CC and had it fixed. 2 weeks out from surgery today still have a long healing process but hopefully I will be Camzyos free.

Yes...I was not out of breath or fatigued before Camzyos. The HCOM doc was irrated with me then and said I was in denial. Gradient was greatly improved a month after starting Camzyos but I am breathless and tired all the time. I feel like I live half of a day each day...

Am on Camzyos 10mg and finally my gradient is below 30 which is where my cardiologist wants me. I too struggle with tiredness, lightheadedness .
Did reduce dose of a med for restless legs because of this thinking that might help. Perhaps it did a little but the tiredness seems to be there still.
I am able to function with daily activities, but do fizzle out sooner than I would like.

@christine270 The cardiologist who stated that you were in denial is not wearing your body and feeling OK in terms of breath and fatigue (which is probably the case for most patients). That OK status described me for the first 20 or so years after a heart murmur was discovered and HCM diagnosed and before a drastic change in 2022. While I was having a stress test in 2016(?) another cardiologist accused me of denial/not reporting pain - why should I when there was none! Have you other options? People in these blogs report new drugs (myqorzo) are becoming available, perhaps further discussion with your doctor will help. I was never on Camzyos, it was in test stage in 2022, my cardiologist said that my HCM would not qualify and I had a septal myectomy in 2022.

@ebony3 Do ask your doctor about the newer drugs (myqorzo) that are becoming available. Other participants in the Camzyos blogs mention one or two new drugs more recently available.