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Relapse/return of symptoms after 21 days on Camzyos

Posted by newtosohcm @newtosohcm, Sep 5, 2023

Started 5 mg Camzyos on 8/16. Felt relief and more energy by the 8th day! and was soooo happy. Returned to things I hadn’t been able to do for many months. Didn’t really OVERdo or anything, Now today on 9/5, I feel the exact same symptoms (bounding HR, fatigue etc) as I had before starting Camzyos. UGH Anyone else have this happen?

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HansJ | @hansj | Sep 5, 2023

Hi, I had my symptoms return when I was switched from 5mg to 2.5mg , luckily I'm back to 5mg and feeling great again. Perhaps your dose just needs to be adjusted by your doc?

REPLY
quinn | @quinn | Sep 6, 2023

Hi NewtosoHXM
After about five months on 5 mg Camzyos, the amazing benefits that made me a productive person again wore off. (My gradient never improved on Camzyos.) The Cardiologist switched me to 10 mg. I felt much better with great energy for several months, but then I actually felt worse qirh ounding heart, lightheadedness, presyncope, weakness, difficulty with sleep and eating, (even nausea possibly related to hypotension). Anyway Cardiologist said to stop taking it, that, "It doesn't work for everyone." which I did about a week ago. Slowly feeling better but I know HOCM symptoms especially the maddening fatigue will return once Camzyos is completely gone from my body in about three more weeks. Am looking into surgery but terrified of postoperative cognitive decline (POCD). There's lots of literature on this topic but, eager to fix your heart, Cardiologists downplay what is likely to happen to your brain especially if your elderly. I'm a 71-year old female.

REPLY
1 reply
quinn | @quinn | Sep 6, 2023

re: Hi NewtosoHXM from Quinn -
Please excuse my fat finger on third line . . . meant to type: with pounding

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newtosohcm | @newtosohcm | Sep 6, 2023
In reply to @quinn "Hi NewtosoHXM After about five months on 5 mg Camzyos, the amazing benefits that made me..." + (show)
@quinn

Hi NewtosoHXM
After about five months on 5 mg Camzyos, the amazing benefits that made me a productive person again wore off. (My gradient never improved on Camzyos.) The Cardiologist switched me to 10 mg. I felt much better with great energy for several months, but then I actually felt worse qirh ounding heart, lightheadedness, presyncope, weakness, difficulty with sleep and eating, (even nausea possibly related to hypotension). Anyway Cardiologist said to stop taking it, that, "It doesn't work for everyone." which I did about a week ago. Slowly feeling better but I know HOCM symptoms especially the maddening fatigue will return once Camzyos is completely gone from my body in about three more weeks. Am looking into surgery but terrified of postoperative cognitive decline (POCD). There's lots of literature on this topic but, eager to fix your heart, Cardiologists downplay what is likely to happen to your brain especially if your elderly. I'm a 71-year old female.

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Thank you so much for responding. I am truly sorry this is happening for you. I’ve got to just hope I’m one of the lucky ones it works for. It’s corny I know, but I’m trying to make everyday count and well, I just keep swimming - the place where nothing bothers me. If it helps at all idk, or gives any comfort, I have friends who have had heart surgery and are doing very well. Wishing you well and yes this is very scary.

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