1. < Hypertrophic Cardiomyopathy (HCM)

Effects after stopping Camzyos

Posted by tjunca @tjunca, Nov 14, 2023

Has anyone taken Camzyos for months then stopped? Did you experience any effects of stopping it suddenly. I just stopped it last week and am having lots of stomach upset and sluggishness. Wasn’t sure if it was Camzyos or completely unrelated.
Thanks in advance.

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deanna529 | @deanna529 | Nov 16, 2023

I stopped it after 6 months. Had a bad reaction to it that I thought would go away. NOT! It definitely triggered something in my body.
Hang in there. Your body will adjust....so I've been told. 🙂

REPLY
1 reply
joannoxenham | @joannoxenham | Jul 22 8:16am

Hello, wondering if your symptoms after stopping camzyos have resolved. I stopped camzyos after four months taking it almost a year ago. My symptoms of shortness of breath and inability to walk stairs and hills returned immediately. But now almost a year later I am having swelling in my abdomen and sweating after any exertion and cold feet which I see can be heart failure. Trying to get into a COE to follow up but wondering if anyone else has had this experience.

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2 replies
joanallione | @joanallione | Jul 23 9:23am
In reply to @deanna529 "I stopped it after 6 months. Had a bad reaction to it that I thought would..." + (show)
@deanna529

I stopped it after 6 months. Had a bad reaction to it that I thought would go away. NOT! It definitely triggered something in my body.
Hang in there. Your body will adjust....so I've been told. 🙂

Jump to this post

Did it adjust after a while? or are you still having these symptoms?

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1 reply
deanna529 | @deanna529 | Jul 23 10:12am
In reply to @joanallione "Did it adjust after a while? or are you still having these symptoms?" + (show)
@joanallione

Did it adjust after a while? or are you still having these symptoms?

Jump to this post

After having a septal myectomy in 2017, Mavacamten for 6 months, and now on a clinical trial for aficamten....no, my symptoms have not gotten better sorry to say. I really don't know what is next. I go back to the clinical study on the 31st. Some people feel better, some don't. My ejection fraction went from 70 to 60, and now 53. It's really a crap shoot.

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deanna529 | @deanna529 | Jul 23 10:14am
In reply to @joannoxenham "Hello, wondering if your symptoms after stopping camzyos have resolved. I stopped camzyos after four months..." + (show)
@joannoxenham

Hello, wondering if your symptoms after stopping camzyos have resolved. I stopped camzyos after four months taking it almost a year ago. My symptoms of shortness of breath and inability to walk stairs and hills returned immediately. But now almost a year later I am having swelling in my abdomen and sweating after any exertion and cold feet which I see can be heart failure. Trying to get into a COE to follow up but wondering if anyone else has had this experience.

Jump to this post

Why did you stop Camzyos?
What is a COE?

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joannoxenham | @joannoxenham | Jul 23 11:07am

I stopped camzyos due to intractable headaches. I am prone to headache but these were unlike any I’ve ever had and lasting days with nausea vomiting and pick axe like pain. It was my cardiologist who asked if maybe the camzyos was the cause because they started a month after and I didn’t think it could be the heart med. But those headaches stopped shortly after stopping the camzyos. But my hypertrophic obstructive cardiomyopathy symptoms returned with a vengeance including this fluid build up and retention in my abdomen and weight gain of 20 lbs since stopping camzyos. Granted I’m moving less so I expected some change. But that’s why I’m trying to find out if others who stopped camzyos have had their symptoms worsen.

COE is center for excellence the medical facilities specifically noted to deal with hypertrophic cardiomyopathy.

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isamac | @isamac | Sep 16 3:56pm
In reply to @joannoxenham "Hello, wondering if your symptoms after stopping camzyos have resolved. I stopped camzyos after four months..." + (show)
@joannoxenham

Hello, wondering if your symptoms after stopping camzyos have resolved. I stopped camzyos after four months taking it almost a year ago. My symptoms of shortness of breath and inability to walk stairs and hills returned immediately. But now almost a year later I am having swelling in my abdomen and sweating after any exertion and cold feet which I see can be heart failure. Trying to get into a COE to follow up but wondering if anyone else has had this experience.

Jump to this post

Why did you stop taking Camzyos?

REPLY
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