Camzyos and heart murmur

Posted by andyherman3 @andyherman3, May 24 9:57am

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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dwc62 | @dwc62 | May 24 1:16pm

That's great, but I don't have a murmur

manuelpo | @manuelpo | May 24 2:19pm

I have a murmur but I have been on camzyos 5 mg for only 7 weeks. After the third day I felt a lot less pressure on my chest. Regarding the murmur, once I reach a finished treatment with camzyos, I will post here how my murmur is doing.

Glad your camzyos treatment is working well for you.

andyherman3 | @andyherman3 | May 24 2:43pm

In reply to @dwc62 "That's great, but I don't have a murmur" + (show)

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.

dwc62 | @dwc62 | May 26 12:53am

I was diagnosed by having an angiogram because I got chest pains when using my tremill.

katiekins | @katiekins | May 29 1:22pm

That’s weird, as I have a heart murmur and have been told I don’t need camyzos (it made me very unwell) because my gradient is small at 1.6 mm and the surgeon would not operate on me only on my mitral valve which needs replacing/repair. He said because my gradient is very high at over 100. How come then it would not disappear with the camyzos? Very confused with all of this.

andyherman3 | @andyherman3 | May 29 3:31pm

You said the Camzyos made you “unwell”. How long were you on it? It might have helped decrease the murmur if you ere able to tolerate it. There are newer drugs on the horizon you may be able to tolerate.

nanakpm | @nanakpm | May 30 3:21pm

After almost a year on Camzyos, murmur is now barely detectable. I felt better long before my gradient decreased. My doctor was ready to give up on Camzyos but I advocated for giving it more time. Very glad I did.

andyherman3 | @andyherman3 | May 30 8:23pm

In reply to @nanakpm "After almost a year on Camzyos, murmur is now barely detectable. I felt better long before..." + (show)

You sound just like me. I hope it keeps improving. How long have you been on Camzyos?

nanakpm | @nanakpm | May 30 9:10pm

Just over a year.

katiekins | @katiekins | May 31 5:27pm

In reply to @andyherman3 "You said the Camzyos made you “unwell”. How long were you on it? It might have..." + (show)

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?