1. < Hypertrophic Cardiomyopathy (HCM)

Camzyos improved my gradient but my symptoms are not better

Posted by andrewbradlyn @andrewbradlyn, 2 days ago

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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mpjg | @mpjg | 1 day ago

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.

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brumasterj | @brumasterj | 1 day ago
In reply to @mpjg "Very similar experience. Started Camzyos 8/2024. After 1 mo on 5 mg, was told that my..." + (show)
@mpjg

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.

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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!

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hjcram | @hjcram | 22 hours ago

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

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