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?

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jachrist | @jachrist | Feb 25 5:29pm
In reply to @deanna529 "@jachrist How long ago did you have it?" + (show)
@deanna529

@jachrist
How long ago did you have it?

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I was originally miss diagnosed as an asthmatic for 16 years, when my breathing kept getting worse. I was an arson investigator and former fire fighter. Then I experienced a sudden cardiac arrest. Mayo knew that I had HOCM.

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jachrist | @jachrist | Feb 25 5:33pm
In reply to @jmr091805 "Thank you for this information. I asked my cardiologist and she said alcohol septal ablation would..." + (show)
@jmr091805

Thank you for this information. I asked my cardiologist and she said alcohol septal ablation would not be the preferred path for me if the Camzyos doesn't work, and that crack-chest-shave-heart surgery would be better for me. I am treated by a cardiac group that is excellent. Believe me, I'm hoping Camzyos works and that I don't need the open heart surgery.

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Best to You!!
Prayers your way!!

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jmr091805 | @jmr091805 | Feb 26 1:12pm
In reply to @deanna529 "My surgery was back in 2017. I was in the hospital 2 weeks. Slow recovery. No,..." + (show)
@deanna529

My surgery was back in 2017. I was in the hospital 2 weeks. Slow recovery. No, my heart is still not functioning the way a normal heart would. Probably never. They told me that. They could not shave it all the way down...Thus the need to try Mavacamten once it was approved by the FDA. Give it time. Your BP was probably up because you are anxious. I get like that. 🙂 I gave it 6 months before I bailed. Your quility of life is most important.
You may not need even open heart surgery. If the Mavacamten works...you will have a new lease on life. I did not give up...I even went on a clinical trial...Remember they did not have cardiac mysosin inhibitors back in 2017.
Message me any time 🙂

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Thank you for the encouragement! It sounds like you have had a tough time with this. I hope you have good quality of life now.

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debialyese | @debialyese | Mar 15 11:22am
In reply to @soonerfan "I’m pretty sure it was raging a war inside my body. I had dizziness so bad..." + (show)
@soonerfan

I’m pretty sure it was raging a war inside my body. I had dizziness so bad that I could hardly function. The cardiologist kept saying ( can’t be the drug) I was on it for 5 months, before being taken off it. Then was diagnosed with Amyloidosis. Am being treated for that now with the HCM on the back burner.
Have a clearer brain now ( most days)
I’m sorry you had such rough side effects. Hopefully they can get you on something that works better.

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Sorry that happened but your doc didn’t order PYP scan to rule out Amyloidosis first? Can’t be treated with Camzyos if you have Amyloidosis...

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1 reply
soonerfan | @soonerfan | Mar 15 3:51pm
In reply to @debialyese "Sorry that happened but your doc didn’t order PYP scan to rule out Amyloidosis first? Can’t..." + (show)
@debialyese

Sorry that happened but your doc didn’t order PYP scan to rule out Amyloidosis first? Can’t be treated with Camzyos if you have Amyloidosis...

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I went to the Mayo Clinic. And had 5 days of testing to confirm the Amyloidosis.
I did 5 months is weekly shots, chemo and steroids.
My light chain numbers started @ 133, they went down to 44. I went back to Mayo, got a new oncologist/hematologist she changed things up a bit. I have since September taken 1 shot a month and take Venclexta daily. My numbers are finally in the normal range. I feel more like myself again.
I am waiting to see a cardiologist @Mayo that specializes in HCM & Amyloid. ( there are 8 @ Rochester). It’s funny I had never even heard of Amyloid and they have 8 cardiologists that specialize In it.

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