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Camzyos improved my gradient but my symptoms are not better
My cardiologist dropped my Camzyos from 5 to 2.5mg after the first month since my gradients decreased to less than 20. After 4 weeks at 2.5 my gradient is still less than 20 so I will stay at 2.5 for the next month. However my symptoms have not improved—I feel short of breath/out of breath more easily, fatigues, lightheaded at times. I was diagnosed with oHCM in September 2023, had a PFA for Afib March 2024, and I take 50mg metoprolol BID and eliquis 5mg BID. I have mild/mitral regurgitation, mild SAM, 1.8 septal thickness. I am concerned that my gradient and symptoms seem to be so disconnected—anyone have a similar experience? Thank you!
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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.
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3 ReactionsI 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.
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2 ReactionsYes...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...