← Return to Side Effects of Mavacamten (Camzyos)

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@deanna529

In response to @jmr091805 and @jachrist
I had a septal myectomy in 2017. They did "crack open my chest". ( open heart surgery) They have to do that in order to shave down your heart. I had it done at UPENN. At the time I was offered a sepal ablation also however I chose not to go that route because sometimes it's not permanent. I have a friend that has to have her 2nd septal ablation. I just wanted it to be "one and done". Everyone is different. I was even on Mavacamten for 6 months. It did not agree with me. So last year I signed up for a clinical trial of Aficamten. That did not agree with me either. Both of those drugs are cardiac myosin inhibitors. Aparently I developed bad side effects from both. Not for me but they have worked wonders for others. Good luck and don't give up.

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Replies to "In response to @jmr091805 and @jachrist I had a septal myectomy in 2017. They did "crack..."

Thanks for sharing this information. How was the crack-chest-shave-heart surgery? How long and how painful was the recovery? After having the heart shaved, does your heart function normally now? I am having all of the symptoms and recently had a cardiac catheterization that confirmed the obstruction. I started Camzyos yesterday morning. I'm having some side-effects and not (yet?) noticing any improvement. An hour after I took the firsst dose I felt out of it/dizzy. That happened again today. Late yesterday, while doing the normal kind of stressful things in daily life, the chest pressure and labored breathing was much worse but that got better. And this morning, my blood pressure upon waking up was 155/100. Cardiologist office said Camzyos would not cause higher blood pressure but I find it to be too much of a coincidence. More like cause and effect. I'm guessing these symptoms on day 1 (and today) of Camzyos were due to the Camzyos. I know there's no way of knowing if Camzyos will make my symptoms better, and I know that sooner or later, I will need the shave heart surgery...