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Anyone take new drug Camzyos (mavacamten) for HCM?

Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)
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@deanna529

I developed a metal taste in my mouth, burning mouth syndrome, and chronic lingual papillitis. It triggered a lot of things that I have never had before. It was all reported to Bristol Meyers Squib. I am still suffering. ;-(
Half-Life of Mava is 6-9 days.
I had a septal myectomy in 2017. Evidently, they didn't or couldn't take down the bottom of my heart enough. So I still have an obstruction. ;-(
Aficamten is not approved yet in the US so I am in a clinical trial. I believe I am on the placebo of metoprolol. After the trial is over I suspect I will go on Aficamten. Good luck to you whichever way you go.

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Replies to "I developed a metal taste in my mouth, burning mouth syndrome, and chronic lingual papillitis. It..."
katiekins | @katiekins | Mar 17 7:31pm

Hi Deanna,
Sorry to hear of all your symptoms on Camzyos that’s annoying when for some it’s a miracle. What is the measurement of your thickening? Mine is 1.7 mm I believe but getting more symptoms now than before. Not terrible but fatigue after eating and slight dizziness. Not sure which way to go and hate the thought of surgery. All good wishes to you on your journey.

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