Camzyos- Pros & Cons

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!

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!

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.

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.

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.

@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

@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.

Hi and welcome to the group!

It's a hard decision to make, and stressful with so many things you will have to make your best educated guess about in consultation with others. So gathering up as much info as you can, and then I hope that things will get to be a bit clearer.

Getting a 2nd opinion can help, one of my friends who's a Dr. said that she and every Doc she knows would go for a 2nd opinion on a decision of this kind. Following her advice, I got one, from a COE and that was helpful.

I started on Camzyos last October, and had improvement in my symptoms in one week, in 3 weeks I was able to keep up with my peers with a small amount of SOB on daily neighborhood walks that have sight hills, previously I'd have had to come to a complete stop 4 or 5 times on the slight hills due to SOB. So I was relived and impressed! I still had the fatigue. I had echo 30 days into taking the med. gradient had improved greatly, and following the required REMS guidelines, the dosage was lowered to 2.5 mg. I was disappointed due to a return to the SOB in a week, and Echos in Dec and Jan showed stable gradients, following REMS guidelines I stayed on the 2.5 with really no improvement in that time. I was surprised as the SOB started to improve over the winter, by March I was able to again keep up with my peer group on regular walks, and that continues. Now if I go up any really steep incline I still need to stop for breaks. On regular walks I'm doing well, slight shortness of breath on an incline but I can do it and still talk which is the guideline I've been looking to. Pre Camzyos I could only do one flight of stairs and then very SOB, now with it I can do 2 flights of stairs and then some SOB but not bad. The fatigue has gotten better too. So for me, I'm glad it's working right now.

I also started on Wegovy last August as I was about 20/ 25 lbs overweight, and there's research I found and discussed with my Doc's that showed less hospitalization and less heart failure with people on it who have oHCM. Wanting to do what I can to improve my odds, I started the Wegovy. I've lost 20lbs and my BMI is now in the normal range, so that could also be a factor in my SOB improvement too?

My back story is that I've been an active person my whole life, and love being outside, so while symptoms of SOB on exertion and fatigue began to creep into my life slowly about 15/ 20 years ago, I kept on doing what I could not knowing I had any reason for being limited besides just getting older ( was what I thought! ) . Three years ago, at age 65, I had an N-Stemi heart attack when I was running hard up a hill on a spring day. After that I had many many follow up tests, but the HCM was not spotted at that time, and the tests showed not a thing wrong with my heart. I'm quite sure now that N-Stemi was from SOB on hard exertion, and maybe was I dehydrated, and somehow the tests overlooked the HCM ? My symptoms got worse for me slowly over the next 2 years, although I was still able to walk distances. I did a few 10 day long walks of 10-12 miles a day with a day pack at a relaxed moderate pace, I needed to go pretty slowly over hills, stop when I had SOB. I was diagnosed with oHCM a year ago after an increase in a heart murmer, showed up on an ECHO with Valsalva, followed by a cardiac MRI. I had a trial of a few meds that did not work for me due to exhaustion side effects, and no help with the SOB, then started on the Camzyos in the fall.

Heat and humidity bother me also, hydration and avoidance of any hard exertion help, when it's really hot, I sometimes wear a cold wet scarf on my neck, have a cold drink ( bring it in an insulated travel cup if going out ), and/ or put a small cold pack from the freezer into a pocket seems to help. Standing up too fast when hot can make me feel a bit dizzy, so I try to stand up slowly, and stand toatlly still for a moment once up, before I start to move about. Pace and taking that pause makes a difference for me.

@walkinggirl thanks for the information