1. < Hypertrophic Cardiomyopathy (HCM)

Camzyos Side Effects

Posted by holly1275 @holly1275, May 23 9:04pm

I was taking Camzyos for 10 days with side effects joint pain dizziness and not sleeping chest pain worse than before I was taking it.
I stopped it on my own.

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

Mentor
Debra, Volunteer Mentor | @karukgirl | May 25 10:38am
In reply to @holly1275 "I am glad you are feeling better and Camzyos worked for you. I can't say the..." + (show)
@holly1275

I am glad you are feeling better and Camzyos worked for you.
I can't say the same for me, I was only on it for ten days and my joints starting burning on 5 mg. I couldn't sleep bad chest pains.
Called my Cardiologist and his assistant made a appointment.
When I explained my symptoms he basically said stopped taking it then.
He was rude and said what do you want me to do.
He basically in the past said there is no other option.
I've tried other medication in the past but my stomach wouldn't have it .
So now I've got to try and find another Dr that knows how to treat Hypertrophic Cardiomyopathy not a easy thing in my state.
I will if I can get in go to Mayo Clinic I four hour ride from my house.
Thank You For Your Reply Best Wishes

Jump to this post

http://mayocl.in/1mtmR63
Hello @holly1275, and welcome to Mayo Connect. I'm so glad you found this group. It must be disheartening to not be able to tolerate Camzyos. It does not work for everyone, and sadly, you sound like you are in that category. I have posted a link to use to self refer. @manuelpo also gave you some good information. There is a tab on the right side of your screen that also shows you how to Request and Appointment.
Mayo Clinic in Rochester is home to the top cardiologists in the world for treating HCM and HOCM.
I traveled from far northern California to Mayo Rochester for my HOCM, and ended up having open heart surgery. It changed my life so much and I have so much appreciation for their expertise.
I was referred to Mayo by my cardiologist who had no clue what I had. He had diagnosed me with five different heart conditions. It was not until I got to Mayo Clinic I knew what I actually had. Have you asked your doctor to be referred to Mayo Clinic Rochester? If you are not comfortable talking to him any longer, I understand that. I was so discouraged by mine too. But he did refer me, so it doesn't hurt to ask. If you are not feeling like you want to do that, have you thought of asking your family practitioner to refer you? You don't need a doctor to be seen, but I think it does help a little. It is so important that your cardiologist knows how to treat HOCM, and you should not feel embarrassed or uncomfortable to ask him to refer you. It's your life!

REPLY
1 reply
holly1275 | @holly1275 | May 25 11:35am
In reply to @karukgirl "http://mayocl.in/1mtmR63 Hello @holly1275, and welcome to Mayo Connect. I'm so glad you found this group. It..." + (show)
@karukgirl

http://mayocl.in/1mtmR63
Hello @holly1275, and welcome to Mayo Connect. I'm so glad you found this group. It must be disheartening to not be able to tolerate Camzyos. It does not work for everyone, and sadly, you sound like you are in that category. I have posted a link to use to self refer. @manuelpo also gave you some good information. There is a tab on the right side of your screen that also shows you how to Request and Appointment.
Mayo Clinic in Rochester is home to the top cardiologists in the world for treating HCM and HOCM.
I traveled from far northern California to Mayo Rochester for my HOCM, and ended up having open heart surgery. It changed my life so much and I have so much appreciation for their expertise.
I was referred to Mayo by my cardiologist who had no clue what I had. He had diagnosed me with five different heart conditions. It was not until I got to Mayo Clinic I knew what I actually had. Have you asked your doctor to be referred to Mayo Clinic Rochester? If you are not comfortable talking to him any longer, I understand that. I was so discouraged by mine too. But he did refer me, so it doesn't hurt to ask. If you are not feeling like you want to do that, have you thought of asking your family practitioner to refer you? You don't need a doctor to be seen, but I think it does help a little. It is so important that your cardiologist knows how to treat HOCM, and you should not feel embarrassed or uncomfortable to ask him to refer you. It's your life!

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Hi
Thank you for the information, I will look into this on Monday, and hope to get a appointment.
I am see a cardiologist at a teaching hospital that supposedly, he is a expertise in the field of heart transplant and Hypertrophic Cardiomyopathy.
But he won't listen to what I have to say it's basically he refer me to other patients.
When I asked him about the side effects of Camzyos, he said none of his patients have had any reactions from it. I thought to myself I am not his other patients I guess I was so shocked I couldn't say anything ..
Then he told me if I was having side effects then stop taking the Camzyos, then he said well what do you want me to do.
Every side effect he said was not related to Hypertrophic Cardiomyopathy it must be something else.
I was dizzy headaches trouble breathing sharp pain in my chest joint pain.
I basically was trying to ask about the side effects.
So mad and disgusted I thought he was better than that.
I was referred to the hospital by my original cardiologist I saw at the hospital and his office when I was originally diagnosed in Dec.
He was the one who said he couldn't do anything more for me .
Thank you again for your kind word.
I will surely look into Mayo Clinic On Monday
God Bless And Thank You

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | May 25 11:59am
In reply to @holly1275 "Hi Thank you for the information, I will look into this on Monday, and hope to..." + (show)
@holly1275

Hi
Thank you for the information, I will look into this on Monday, and hope to get a appointment.
I am see a cardiologist at a teaching hospital that supposedly, he is a expertise in the field of heart transplant and Hypertrophic Cardiomyopathy.
But he won't listen to what I have to say it's basically he refer me to other patients.
When I asked him about the side effects of Camzyos, he said none of his patients have had any reactions from it. I thought to myself I am not his other patients I guess I was so shocked I couldn't say anything ..
Then he told me if I was having side effects then stop taking the Camzyos, then he said well what do you want me to do.
Every side effect he said was not related to Hypertrophic Cardiomyopathy it must be something else.
I was dizzy headaches trouble breathing sharp pain in my chest joint pain.
I basically was trying to ask about the side effects.
So mad and disgusted I thought he was better than that.
I was referred to the hospital by my original cardiologist I saw at the hospital and his office when I was originally diagnosed in Dec.
He was the one who said he couldn't do anything more for me .
Thank you again for your kind word.
I will surely look into Mayo Clinic On Monday
God Bless And Thank You

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Don't forget!
Monday is Memorial Day...when we honor those who died serving our Country.
It is never a bad thing to get another opinion. Especially from the world's leading authorities in HOCM at Mayo Clinic. It really sounds like your cardiologist is not listening to you. That can be so frustrating! I had to see three cardiologists before I was diagnosed correctly, so don't think you are doing anything wrong by seeking more information. Especially if you feel brushed aside and unheard...

REPLY
holly1275 | @holly1275 | May 25 12:07pm

I was thinking Memorial Day was next weekend LOL yes my family all served and it is a very important holiday.
Thank you for your reply ...

REPLY
mcgu | @mcgu | Dec 13 1:46pm

Hi everyone, I have HCM and started Camzyos three months ago. My most recent echo showed "a trace pericardial effusion, which appears to be free-flowing." I’m wondering if this could be a side effect of the medication. Has anyone else experienced this? Thanks in advance for sharing your insights!

REPLY
1 reply
Mentor
Debra, Volunteer Mentor | @karukgirl | Dec 14 9:50am
In reply to @mcgu "Hi everyone, I have HCM and started Camzyos three months ago. My most recent echo showed..." + (show)
@mcgu

Hi everyone, I have HCM and started Camzyos three months ago. My most recent echo showed "a trace pericardial effusion, which appears to be free-flowing." I’m wondering if this could be a side effect of the medication. Has anyone else experienced this? Thanks in advance for sharing your insights!

Jump to this post

https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
https://www.camzyos.com
Hello @mcgu, and welcome to Mayo Connect. It looks like this is your first post. Have you had a chance to poke around here on Connect? I gave you a link to the Camzyos support group in Hypertrophic Cardiomyopathy that has lot of information about all sorts of things related to taking Camzyos.
I also posted the Camzyos link for patients, have you gone there to look for answers?
I was not able to take Camzyos, and had to have open heart surgery for my HOCM, so I cannot speak to what all the side effects of Camzyos can be.
What did your cardiologist have to say about the pericardial effusion? When is your next echo?

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