Anyone been on camzyos for approx a year?

Similar experience. Started csmzyos in Mar 2023 at 5 mg. Very quickly had improved living issues.. less fatigue and breathlessness..
But not much gradient improvement..so moved to 10. Next check.same story so moved to 15
The last gradients were close to what my Dr had hoped for. I'm in Pt now for length strenth..an old problem At age 82 I'm thankful and hopeful for continued improvement

Thanks for your reply. Wondering if slower response is age related. I’m
75. About to start a cardiac rehab program now that I have a normal gradient and can exercise more. Wishing you good results from your physiotherapy!

75 yr old male. Average weight and BMI. Generally good health other than HOCM. Also take metroprolol and losartin and atorvostatin.
24th month on 2.5mg Camzyos (reduced from 5mg after first month).
Results: felt back to normal in 3 days. Constant improvement in echo measurements over past 2 years. Valve murmur has also about disappeared.
Very thankful!
I understand the dosage needed varies in a very nuanced way depending on body size and individuals metabolism. Maybe we should not be too concerned about size of dose, but rather the measured results.
God bless!

Totally agree with you. And glad to know you’re doing well.
The pharmacogenomic test I did indicated I’m a rapid metabolizer of Camzyos so would need a higher dose. My valve murmur is now almost imperceptible. Long may it last!

When you say your valve murmur do you mean your leaky mitral valve has resolved itself? Camzyos did nothing for me and about to have a valve repair in August with a gradient if over a hundred but minimal thickening of 1.6 mm

Katie: My long standing mitral valve murmur is caused by regurgitation and the valve flap and connecting tissues bumping against the thickened septum wall (can be seen during the echo cardiogram). Over the past two years this "noise" has reduced. WHY? ..... At this point we as patients realize we don't even know what we don't know about this marvelous precise design of the heart. Basically the mitral murmur has to do with fluid dynamics in and around my HOCM heart that are not optimal and cause "turbulence". I am led to believe the murmur reduction after 2 yrs of Camzyos MAY be related to smoother operation of the heart muscle fibers and a slight reduction in the septal wall thickness. Credible Clinical evidence of this nationally is not yet known.
I have a 74 yo female friend who does not have HOCM, but had mitral valve repair/replacement surgery via catheter etc. It went very smoothly, quickly, and with great results and recovery after some cardiac rehab.
God's blessings and prayers for great outcomes for you also!

My experience is very similar to yours. I am on 15 mg of Camzyos and doing so well. I assume I will stay on that dose. I feel so much better on Camzyos after a year. My question for you is what will we all do if Camzyos is not offered to us at this low cost? Also, I rarely get sick, but if I feel a cold coming on, it is harder to breathe. Do you experience that?

I have not had that problem with breathing.
Thankfully, my insurance coverage now pays for Camzyos. My doctor thinks that the government health care plan will eventually cover it (in Canada). I hope the cost comes down in the US. It is ridiculously expensive.

Thank you Captain Terry for replying. Well sadly Camzyos is not for me and after several weeks made feel ill so had to stop. It’s wonderful that it works so well for some, wonderful. My surgeon has said my gradient in valsalva is over 100 and too high although I feel fine most of the time. My mitral valve repair/replacement is due in August. The reason he said the drug isn’t for me is my thickening of the left ventricle is so small at 1.5 therefore not for me but the valve needs replacing or repairing. Thank you for your kind words and wishing you all the best.