Camzyos- Pros & Cons

Posted by hopenr @hopenr, May 20 6:41pm

I have been treating HoCM with Verapamil for years and lately it has taken a nose dive. My cardiologist has previously sent me to Anschutz which is a CoE and based on the echo and the treadmill, it was decided that I did not need to make any changes but since then, it has gotten worse. I want to know who is having great results and not great results with Camzyos. Your experience will help inform my direction so, thank you! I am thinking of making another appointment or just waiting for my echo in October.

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Hi there...started on 5 mg Camzyos in Oct 2025...had side effects of dizziness, fatigue...had echo 30 days into taking the med. Gradient had improved greatly so dosage was lowered to 2.5 mg. Echos in Dec and Jan showed stable gradients; next echo in June. Side effect of dizziness diminished when doc switched my initial 5 mg to bed time vs. morning. The fatigue was difficult in the autumn months..trying to get ready for holidays and had no energy or interest in celebrating or being with people. I pushed through it. Energy started to return around March and I am able to do at least 3/4 of what I usually do. A thyroid issue was discovered with a routine check-up recently so that may well also have contributed to the fatigue. Thyroid med has been adjusted but it takes time to improve so we will see. Best wishes to you!

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Welcome to the club? Expect possible great results from Camzyos. I am a 3+ year user and it changed my life in the first week after years of HOCM. You can read most of my journey posted on this site.
Make sure you have "obstructive" HCM.
I just wish it worked for everyone.
May God bless you richly!

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I have read that Camzyos has been a miracle drug for many, has done nothing for many and for the rest of the HOCM people prescribed it, has helped for a while and then it did not. My doctor has said the same. It was not recommended for me, and I had a septal myectomy while Camzyos was still in the testing stages. Weighing the pros and cons is certainly very important. Be sure to ask your doctor WHY he/she believes it is a good option for you.

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I've been on Camzyos for almost 4 months now, but prior to that had minimal issues with my HCM. Except periodic palpitations. About a month before I started camzyos it got a lot worse. Couldn't climb stairs without running out of breath, had to sit down a lot, and feeling run down. My echo's during the first 2 months of Camzyos didn't show any improvement, but physically I felt a lot better. My last echo (May 2026) showed a great improvement and looking like the medicine is working. I will admit it was scarey at first to take the medication as they give you so many warnings, but it was better than the other options. I'm on a low dose (5mg) every day and seems to be working. I still get some heart palpitations, and am tired, but overall I feel it was a good decision.

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Hello hopenr,
I have been on Camzyos for a year or so.
Have had no significant side effects and 4 months ago my gradient was 20 after being in the 70-80 range.
Trust you can make the decision that is best for you.

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Profile picture for snewbrough @snewbrough

I've been on Camzyos for almost 4 months now, but prior to that had minimal issues with my HCM. Except periodic palpitations. About a month before I started camzyos it got a lot worse. Couldn't climb stairs without running out of breath, had to sit down a lot, and feeling run down. My echo's during the first 2 months of Camzyos didn't show any improvement, but physically I felt a lot better. My last echo (May 2026) showed a great improvement and looking like the medicine is working. I will admit it was scarey at first to take the medication as they give you so many warnings, but it was better than the other options. I'm on a low dose (5mg) every day and seems to be working. I still get some heart palpitations, and am tired, but overall I feel it was a good decision.

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@snewbrough I have been on Camzyos 6 years started on the 2.5mg and 6 months a go went to the 5mg for me the worst thing is the Texas heat in the summer I still get dizzy and pass out sometimes

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Profile picture for texan1 @texan1

@snewbrough I have been on Camzyos 6 years started on the 2.5mg and 6 months a go went to the 5mg for me the worst thing is the Texas heat in the summer I still get dizzy and pass out sometimes

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@texan1 I see that this is your first post! Welcome and I am glad you shared your experience. I have never been on Camzyos (had a septal myectomy) but do read the many unique experiences posted by participants. Every contribution is helpful to those on Camzyos. I would bet that the Texas heat (and humidity in the eastern part of the state) is bothersome to most no matter what their medical status may be. I found this article issued by the UK government that addresses your experience - the dizziness and passing out (syncope) are mentioned. https://www.gov.uk/government/news/dont-let-the-heatwave-affect-your-medicines-three-important-tips-from-the-mhra.
Please share your coping strategy for when you must be outdoors during hot weather.

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