What numbers to expect on Echo after starting Camzyos

Posted by colliemom517 @colliemom517, Nov 18, 2023

Hello, I started on Camzyos, 5mg, about 4 weeks ago and had my first echocardiogram. I have a video visit with my Doctor next week. I am just wondering exactly what numbers are the most important on the echo, to watch. LVOT resting gradient and Valsalva?
Thanks!

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

I am so glad I joined this group that I found by accident researching information on Camzyos. I just started on 2.5mg low dose since I am also taking metaprolol and amiodorone along with xeralto. I noticed slight checst pain that comes and goes. Is that normal or should I be worried?

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Gradient was 47 before camzyos and 33 after 3 weeks. I had side effect leg swelling and pulse rate increase so doctor told me to stop. After a week the leg swell went down so he told me to start back on 5mg and watch for swelling. I bought a Fitbit so I am more aware of my pulse than when I just counted it to 6 seconds. It was 72 resting before camzyos and now is 78 with occasional spikes to 140 bpm.

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@hood

I am so glad I joined this group that I found by accident researching information on Camzyos. I just started on 2.5mg low dose since I am also taking metaprolol and amiodorone along with xeralto. I noticed slight checst pain that comes and goes. Is that normal or should I be worried?

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Hello @hood, and Welcome to Mayo Connect! I see you posted this a month ago and got no response yet. Let me introduce you to the Hypertrophic Cardiomyopathy group https://connect.mayoclinic.org/group/hypertrophic-cardiomyopathy-hcm/
and the Camzyos Group
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
Take a look around, if you have not yet, and hopefully you will find information that is helpful.
I'm so glad you found Mayo Connect. Does your cardiologist know about your chest pain that comes and goes? How long have you been on Camzyos?

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@markmayo

Gradient was 47 before camzyos and 33 after 3 weeks. I had side effect leg swelling and pulse rate increase so doctor told me to stop. After a week the leg swell went down so he told me to start back on 5mg and watch for swelling. I bought a Fitbit so I am more aware of my pulse than when I just counted it to 6 seconds. It was 72 resting before camzyos and now is 78 with occasional spikes to 140 bpm.

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How do you feel now? Are you taking other meds with Camzyos? I could not get in with it sadly. Was getting side effects severe headaches etc..,,jaw ache, throbbing right arm so stopped. Started again but side effects started again. So stopped again.,Good luck on your journey, we are all different.

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@katiekins

How do you feel now? Are you taking other meds with Camzyos? I could not get in with it sadly. Was getting side effects severe headaches etc..,,jaw ache, throbbing right arm so stopped. Started again but side effects started again. So stopped again.,Good luck on your journey, we are all different.

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I just noticed leg swelling and pulse rate increase but since you mentioned jaw ache I had it but didn't think of it as a side effect because it isn't on the list. My leg swelling went away a week after I stopped camzyos so I started back up. For high blood pressure I was on metapropol, verapamil, and losartan. I stopped verapamil because it interacts with camzyos but my blood pressure went up so I started taking more losartan and it came back down. I really want this to work because I don't want them to cut. There are other things that can cause the side effects. My doctor told me for leg swelling don't eat salt. I checked my sugar when I had severe headaches and it was as high as 250 once.

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@markmayo

Gradient was 47 before camzyos and 33 after 3 weeks. I had side effect leg swelling and pulse rate increase so doctor told me to stop. After a week the leg swell went down so he told me to start back on 5mg and watch for swelling. I bought a Fitbit so I am more aware of my pulse than when I just counted it to 6 seconds. It was 72 resting before camzyos and now is 78 with occasional spikes to 140 bpm.

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Hello. My gradient was 69 before starting Camzyos and after 3 (1 on 5mg, 2 on 2.5 mg)months it is 30. Cardiologist is pleased and my out of breath condition has improved but not completely gone. I’ve been experiencing tremendous jaw ache on the right side and I’ve gained weight. However, this is better than my former feeling of hopelessness. Be well my companions on this journey.

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@markmayo

I just noticed leg swelling and pulse rate increase but since you mentioned jaw ache I had it but didn't think of it as a side effect because it isn't on the list. My leg swelling went away a week after I stopped camzyos so I started back up. For high blood pressure I was on metapropol, verapamil, and losartan. I stopped verapamil because it interacts with camzyos but my blood pressure went up so I started taking more losartan and it came back down. I really want this to work because I don't want them to cut. There are other things that can cause the side effects. My doctor told me for leg swelling don't eat salt. I checked my sugar when I had severe headaches and it was as high as 250 once.

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Hello there, thanks for replying. Yes I am on verapamil and maybe that’s my problem as I felt terrible. Did your cardiologist tell you to stop Verapamil? I am thinking of going the surgery route as this is never ending and now leading half of a life. Have you heard of the other drug called Aficamton? Similar to Camzyos except with side effects with other drugs. This is such a useful site for us all thanks again. Kate

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