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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Jun 22 2:38pm | Replies (736)
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@karukgirl

I am so glad your doctor listened to you and you were able to make your needs known. This is not a one-size-fits-all deal, and being able to have input, be heard, and responded to in a positive way must feel like a big win @hansj!
This up and down, back and forth stuff must be frustrating for you! How long after going back on the 5mg will you see your doctor again?

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Replies to "I am so glad your doctor listened to you and you were able to make your..."
HansJ | @hansj | Jul 19, 2023

I'm scheduled for another echo in 5 weeks just to confirm all is well. My doctor says that while I was his second patient on this drug, he now has many and feels comfortable overriding protocol where it makes sense.
I completely understand the need for the protocol as they try to find the lowest level required to eliminate HCM symptoms for each individual while not decreasing heart pumping too much.
Did anyone else ever play that video game "lunar lander" back in the early 80's? the strategy feels a lot like that LOL!

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