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Camzyos and heart murmur

Posted by andyherman3 @andyherman3, May 24, 2024

I have been on Camzyos for 7 months and it took me almost 5 months to really feel the benefit, despite the fact that my gradient went to almost normal. I’m so glad I didn’t quit taking it. What’s most interesting is at my cardiology appt last month my Dr. could barely hear my previously very loud, heart murmur. We were both pleasantly surprised. I’m hoping that means that my septum size may actually be decreasing. 🤞 Has anyone else been told their murmur decreased on Camzyos? Just curious.

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joanallione | @joanallione | May 30 9:05am

That’s great. It does mean that the obstruction from your heart has been relaxed by the CAMZYOS my doctor is listening to mine after I’ve been on CAMCYOS since January and he said it’s still pretty loud he wants me to take more, but I’ve been having trouble with that

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joanallione | @joanallione | May 30 9:09am
In reply to @katiekins "On Camyzos for about 12 days...initially I felt great and alive but then the headaches started..." + (show)
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On Camyzos for about 12 days...initially I felt great and alive but then the headaches started (I never get headaches) as if my head was in a pressure cooker, my eyes went very blurry with terrible jaw ache, swollen ankles, holding on to urine and I then developed atrial fibrillation. That why I had to come of the drug. I stopped for a week and then started again and the symptoms started again so we decided to stop it and obviously wasn't for me. I am waiting for a mitral valve repair/replacement. So very disappointed as I thought this would be the miracle drug for me. I wish everyone happiness that they are having such good results from the drug. Anyone on here had similar problems to me?

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You didn’t say how much you were taking. They make it in as small dose as 2.5. He might try lessening the dose probably you were taking five that’s what they start everyone at.

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joanallione | @joanallione | Jul 25 7:18am
In reply to @joanallione "You didn’t say how much you were taking. They make it in as small dose as..." + (show)
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You didn’t say how much you were taking. They make it in as small dose as 2.5. He might try lessening the dose probably you were taking five that’s what they start everyone at.

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I was taking five and increased it to 7.5

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manuelpo | @manuelpo | Jul 30 7:10am

I have been taking Camzyos 5 mg for the last 16 months and my murmur now is a lot less than before.

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hougoss | @hougoss | Aug 7 12:54pm
In reply to @andyherman3 "Interesting. I guess I assumed that most people did as that’s how my brother and I..." + (show)
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Interesting. I guess I assumed that most people did as that’s how my brother and I were both diagnosed (new onset murmurs in our 50’s) several years before either of us became symptomatic.

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Heart murmur in my 50’s was the first alert for me as well. No symptoms occurred until I turned 64.

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