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Anyone take new drug Camzyos (mavacamten) for HCM?
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 23 7:57am | Replies (770)Comment receiving replies
Hi Deanna, so sorry to hear you came off Camzyos. May I ask what your symptoms were? I felt great on it for a couple of weeks but had to stop also of side effects sadly. Does anyone know how long it takes for the drug to come out of our system. Aficamten I don’t believe is here in the U.K. so am thinking of a myectomy.
Thank you, wish you all the best.
Replies to "Hi Deanna, so sorry to hear you came off Camzyos. May I ask what your symptoms..."
Kate, wishing you and Deanna the best. I had a myectomy in July, 2022. Very glad I did, it was time. was diagnosed 10 or 12 years before, perscribed blood pressure meds. A sudden syncope event followed by severe shortness of breath, and kidney problems were beginning to become serious. Post surgery, within 6 weeks my life was back to normal - walking 3 mi/5 km daily, etc. A couple of treatable complications developed. Good luck with whatever you decide.
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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.