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Has anyone stopped taking camzyos? I have stopped and feel very sick.
Hypertrophic Cardiomyopathy (HCM) | Last Active: Sep 1 6:39pm | Replies (48)Comment receiving replies
I was on Camzyos for over a year. I was on 5mg. Had an echo and was told to go off of it now. That was 5 weeks ago. Because I had heart failure and my ejection fraction decreased to 45. Had to have echo in a month. Which I did and was told if it went up then possibly try 2.5mg. Camzyos. Dr is out of town till next week. My ejection fraction is up to 55. My concern is I did not feel good after going off it. Feel awful. I don’t want to wait another week. Told Camzyos stay in system a month ago. I am concerned, I keep getting side effects . . I cannot take the ups and downs. I also just had breast cancer with radiation and put on new meds for that. Has anybody else went off and back on? Don’t like the withdraws. Messes with your body.
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I got off camzyos. Did not work for me. It’s when I decided to have the septal myectomy. I came to terms with it. I felt awful on camzyos. Unfortunately, I had to have a second septal myectomy at the Mayo Clinic. Dr. Derani told me he has to do many re- dos. I am 36 but after 2 open hearts in less than a year, I have major confusion and anxiety. They say it’s typical. So I am perhaps still recovering. It’s been 14 months since surgery. Hang in there. There will be a solutio.