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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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@karukgirl

I think anyone facing the prospect of having open heart surgery would be scared, @chris7121. I was for sure! It's important to learn all you can about HOCM and to have an expert in treating it. The end of June sounds so far away before you learn if he qualifies for Camzyos. If he does qualify for Camzyos, have you started a list of questions to ask the new cardiologist? If he does not qualify for the drug, do you have a list of questions for that too?

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Replies to "I think anyone facing the prospect of having open heart surgery would be scared, @chris7121. I..."
dbrima | @dbrima | May 24, 2023

My daughter is being measured for open heart. She is 38, divorced, with a son (5) on the spectrum. We had some weeks of good results on camzyous and many bad. She was first in Houston. Everyone is different, however. She never really had bad side effects. Gradient would go to 0 and several weeks rise to 100, then back down, then up again. Side effects more from heart failure. We are all terrified. She only weighs 100. Suffered from septic shock in January. Has been on camzyous since last October.

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