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HCM with no options for medication for relief of symptoms

Hypertrophic Cardiomyopathy (HCM) | Last Active: Aug 28 7:46am | Replies (36)
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@rmhc123

Hi,
I’ve become more symptomatic as well and my doctor has prescribed a stronger diuretic (Torsemide) for water retention. I just finished the clinical trial screening for Aficamten and waiting to see if I qualify. It’s a double blind study with a 50% chance of being placed on a placebo.
Where do you live and who is your provider? I’m in Atlanta and use Emory, but the study is being conducted at sites all over the country and they are actively enrolling.

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Replies to "Hi, I’ve become more symptomatic as well and my doctor has prescribed a stronger diuretic (Torsemide)..."
blessmyheart | @blessmyheart | Jul 29 11:55am

Thankfully I am at a center of excellence. My cardiologist who is brilliant and wonderful to partner with on this journey just mentioned aficamten to me. The trial just closed so if all
Looks good in the data and FDA approves I will try this. I have one of the rarer genetic mutations so it may not work for me. I am thankful I do not have obstruction but options seem very limited. He offered a mild
Diuretic so I’m gonna try that. I do think my symptoms are exacerbated bcz of “hormone transitions” too so trying to look at all the angles 🙂

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