Camzyos thoughts? Good or bad

Posted by muddymudskipper @muddymudskipper, Jun 3 10:57am

Camzyos has been offered as a treatment for my HCM. Those that have tried or are taking this medication, what are you thoughts? Can you tell a difference or any side effects you notice?

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I'm only 6 weeks in taking Camzyos and guess its helping. Less SOB and my numbers have improved with my first echo. I seem to have no side effects but can't say im ready to run a race. Daily animal care, lifting feed for horses is ok, but not like when I was 30! Lol
Occasional crummy days. Still tired (or lazy, can't tell) but find really working on my sleep habits and getting my constant digestive upset resolved with probiotics helps a lot. Hoping to push my exercise activity and seeing how that progresses. It's a journey without a clear destination. Hang with it and be persistent and patient.

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I'm only 6 weeks in taking Camzyos and guess its helping. Less SOB and my numbers have improved with my first echo. I seem to have no side effects but can't say im ready to run a race. Daily animal care, lifting feed for horses is ok, but not like when I was 30! Lol
Occasional crummy days. Still tired (or lazy, can't tell) but find really working on my sleep habits and getting my constant digestive upset resolved with probiotics helps a lot. Hoping to push my exercise activity and seeing how that progresses. It's a journey without a clear destination. Hang with it and be persistent and patient.

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@doctorboo1 Glad to hear your numbers are improving! You said it perfectly, "It's a journey without a clear destination." The uncertainty of how the medication will work for each person, how the follow up echos will turn out, side effects, etc... so much that is unknown. Not to mention the waiting process to see if insurance will approve Camzyos and enrolling in the program. Waiting is the hard part when you are just ready to start the medication and get hopefully start feeling better sooner rather than later! Successful vibes headed to you!

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I started Camzyos in 2023. It was hard to convince my doctor to prescribe it - she was pushing surgery. Within a few days I felt better; no side effects. But it took 6 months for my gradient to come down and I had to push my doc to prescribe higher doses of Camzyos. My gradient finally came down and is now normal! I am hugely grateful every day for the researchers who developed this drug. I have my life back. And I’m grateful for Canadian health care which pays for the drug!

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