1. < Hypertrophic Cardiomyopathy (HCM)

Side Effects of Mavacamten (Camzyos)

Posted by deanna529 @deanna529, Nov 16, 2023

I was on Mavacamten (Camzyos) for 6 months. It immediately triggered Burning Mouth Syndrome, Chronic Lingual Papilitis, and a metal taste in my mouth. I have never had this before. I had to stop the drug because this was worse than HOCM. Quality of life was awful. I couldn't taste anything. Reported it to Bristol Meyers Squib. It had only been on the market for 1 1/2 years when I tried it. At least it is documented.
Has anyone had any bad side effects on Mavacamten?

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

tojk | @tojk | Jan 18 6:26am

I have been taking Camzyos for about a year. 4 months ago my right leg began to atrophy and weaken and is now significantly smaller than the left. I recently saw a physician who suggested it could be nerve degeneration. I am awaiting the results of an MRI. Anyone else experiencing this?

REPLY
3 replies
Mentor
Debra, Volunteer Mentor | @karukgirl | Jan 19 9:40am
In reply to @tojk "I have been taking Camzyos for about a year. 4 months ago my right leg began..." + (show)
@tojk

I have been taking Camzyos for about a year. 4 months ago my right leg began to atrophy and weaken and is now significantly smaller than the left. I recently saw a physician who suggested it could be nerve degeneration. I am awaiting the results of an MRI. Anyone else experiencing this?

Jump to this post

Hello @tojk, and welcome to Mayo Clinic Connect. I'm glad you found this online support group and posted your question. If there is another member who shares your same situation, I hope they can respond and share.
While you wait for your MRI results, have you checked on the Camzyos site for patients?
Here is their link:
https://www.camzyos.com/
How is your HCM doing on Camzyos?
When do you see your doctor again?

REPLY
tojk | @tojk | Feb 2 4:43pm
In reply to @tojk "I have been taking Camzyos for about a year. 4 months ago my right leg began..." + (show)
@tojk

I have been taking Camzyos for about a year. 4 months ago my right leg began to atrophy and weaken and is now significantly smaller than the left. I recently saw a physician who suggested it could be nerve degeneration. I am awaiting the results of an MRI. Anyone else experiencing this?

Jump to this post

Where else can I go to find out if others are experiencing the same issue? i've been told it is nerve deteriorating and it is very painful. Others have mentioned leg numbness which is also a nerve issue.

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Moderator
Justin McClanahan, Moderator | @JustinMcClanahan | Feb 4 7:15am
In reply to @tojk "I have been taking Camzyos for about a year. 4 months ago my right leg began..." + (show)
@tojk

I have been taking Camzyos for about a year. 4 months ago my right leg began to atrophy and weaken and is now significantly smaller than the left. I recently saw a physician who suggested it could be nerve degeneration. I am awaiting the results of an MRI. Anyone else experiencing this?

Jump to this post

Hello @tojk,

I combined your discussion with an existing discussion titled:

"Side Effects of Mavacamten (Camzyos)"
- https://connect.mayoclinic.org/discussion/side-effects-of-mavacamten/

Many members have shared their experiences with varied side effects and may have some insight to share. @tojk, were you able to get the results of your MRI and discuss them with your provider? Were they able to find any results or potential causes for your atrophy?

REPLY
2 replies
deanna529 | @deanna529 | Feb 4 11:01am
In reply to @JustinMcClanahan "Hello @tojk, I combined your discussion with an existing discussion titled: "Side Effects of Mavacamten (Camzyos)"..." + (show)
@JustinMcClanahan

Hello @tojk,

I combined your discussion with an existing discussion titled:

"Side Effects of Mavacamten (Camzyos)"
- https://connect.mayoclinic.org/discussion/side-effects-of-mavacamten/

Many members have shared their experiences with varied side effects and may have some insight to share. @tojk, were you able to get the results of your MRI and discuss them with your provider? Were they able to find any results or potential causes for your atrophy?

Jump to this post

I had bad side effects with Mavacamten and also with Aficamten in a clinical trial. It seems that "cardiac myosin inhibitors" do not agree with me. I did not realize that was the comon demoninator when I signed up for the double blind study. I am back to my metoprolol and feel much better than I did when I was on those 2 drugs. It's not for everyone. No more experimenting for me. 2 1/2 years of pure hell.

REPLY
1 reply
tojk | @tojk | Feb 4 4:58pm

Thank you so much for your feedback. I am sorry for what you went through and hope you are doing well.

REPLY
tojk | @tojk | Feb 4 4:59pm
In reply to @JustinMcClanahan "Hello @tojk, I combined your discussion with an existing discussion titled: "Side Effects of Mavacamten (Camzyos)"..." + (show)
@JustinMcClanahan

Hello @tojk,

I combined your discussion with an existing discussion titled:

"Side Effects of Mavacamten (Camzyos)"
- https://connect.mayoclinic.org/discussion/side-effects-of-mavacamten/

Many members have shared their experiences with varied side effects and may have some insight to share. @tojk, were you able to get the results of your MRI and discuss them with your provider? Were they able to find any results or potential causes for your atrophy?

Jump to this post

Thank you for your follow up. I should have my MRI results by the end of the week.

REPLY
peggynurse | @peggynurse | Feb 5 8:33am
In reply to @deanna529 "I had bad side effects with Mavacamten and also with Aficamten in a clinical trial. It..." + (show)
@deanna529

I had bad side effects with Mavacamten and also with Aficamten in a clinical trial. It seems that "cardiac myosin inhibitors" do not agree with me. I did not realize that was the comon demoninator when I signed up for the double blind study. I am back to my metoprolol and feel much better than I did when I was on those 2 drugs. It's not for everyone. No more experimenting for me. 2 1/2 years of pure hell.

Jump to this post

so do you have cardiomyopathy?

REPLY
1 reply
deanna529 | @deanna529 | Feb 5 3:02pm
In reply to @peggynurse "so do you have cardiomyopathy?" + (show)
@peggynurse

so do you have cardiomyopathy?

Jump to this post

Yes, I have Hypertrophic Obstructive Cardiomyopathy since 2016. I have already had a septal myectomy in 2017. Still have symptems. It is what it is. After trying all these new meds...I am just better off living with the side effects. 🙁
I do know that some of these new meds have really helped a lot of people. My echos were better but the side effects killed me. I wound up having other problem after 2 days on Aficamten that had to be addressed with inflamation in my colon reaching 400 mcg. (normally under 50). Diarrhea for 3 months straight. Couln't leave the house. Never had that before. I am much better now after months of problems. Everything settled down. Proctologist and cardiologist both agree it was the new meds. I even had to have a colonoscopy. GRRRRR
Everything came back fine a few months later. Lesson learned 🙂

REPLY
1 reply
peggynurse | @peggynurse | Feb 5 3:51pm
In reply to @deanna529 "Yes, I have Hypertrophic Obstructive Cardiomyopathy since 2016. I have already had a septal myectomy in..." + (show)
@deanna529

Yes, I have Hypertrophic Obstructive Cardiomyopathy since 2016. I have already had a septal myectomy in 2017. Still have symptems. It is what it is. After trying all these new meds...I am just better off living with the side effects. 🙁
I do know that some of these new meds have really helped a lot of people. My echos were better but the side effects killed me. I wound up having other problem after 2 days on Aficamten that had to be addressed with inflamation in my colon reaching 400 mcg. (normally under 50). Diarrhea for 3 months straight. Couln't leave the house. Never had that before. I am much better now after months of problems. Everything settled down. Proctologist and cardiologist both agree it was the new meds. I even had to have a colonoscopy. GRRRRR
Everything came back fine a few months later. Lesson learned 🙂

Jump to this post

thank you for the feedback. I am so happy you are feeling better.

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