Anyone take new drug Camzyos (mavacamten) for HCM?

Posted by captainterry @captainterry, May 25, 2022

Since FDA approval in April has anyone (non-clinical trial patient) actually obtained a prescription and had it filled? If so, when and where was the cardiologist located? Is the registration process for doctor/patient/Rx taking a long time for this much anticipated drug?
Thanks from a fellow patient!

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

boatsforlife | @boatsforlife | May 6 10:09am

In reply to @carolinca "Thank you! I’m relatively new here. Is there a different thread related to Aficamten?" + (show)

@carolinca welcome to the forum. I think the link below will take you to a discussion thread relating to aficmaten (Myqorzo). There are lots of other mentions of aficamten in the HCM threads, especially from people for whom mavacamten (Camzyos) hasn't worked. I got lucky with Camzyos as all of my symptoms completely disappeared in just 12 days, and I have not had any negative reactions other than a minor increase in blood pressure that was treated with a tweak to my blood pressure meds. Like any medication, some folks have not responded well to Camzyos - it didn't work well, or it caused unacceptable side effects, or for some, it actually made things worse. See the comment from @cindyw9999 as just one example (sorry to hear it wasn't helpful for you Cindy.) Sometimes the best solution may be myectomy or ablation. We are all different so having another treatment option (aficamten) is exciting news even for Camzyos users like me. Please do keep us posted as you begin this journey.
https://connect.mayoclinic.org/discussion/myqorzo-has-anyone-tried-this-new-alternative-to-camzyos/

cindy | @cindyw9999 | May 6 6:46am

In reply to @dconner "Just started on 5 mg of Camzyos yesterday. Of course it’s too early to see any..." + (show)

@dconner
I was also diagnosed in December and am 65

After 3 months on camzyos my side effects were horrific and I was basically unable to function (was a healthy active person prior )

Having septal myectomy end of the month

I’m not a believer in the camzyos treatment. It’s like a roller coaster and you end up back in the same place.

I have heard that’s it’s worked for some but not for me

Good luck

carolinca | @carolinca | May 5 9:04pm

Thank you! I’m relatively new here. Is there a different thread related to Aficamten?

boatsforlife | @boatsforlife | May 5 5:39pm

In reply to @carolinca "My prescription for Aficamten was just approved. First payment $2,000. Hoping to be able to live..." + (show)

@carolinca hello! Even though this thread is technically about mavacamten (Camzyos), I'm betting there's a ton of people on mavacamten who will be VERY interested to hear about your experience with aficamten - especially those who have not had the best experience on Camzyos. Please keep us advised about it. Good luck!

carolinca | @carolinca | May 5 11:51am

My prescription for Aficamten was just approved. First payment $2,000. Hoping to be able to live with the side effects. I’m wondering what others have experienced.

dconner | @dconner | May 3 12:19pm

Hello, it took less than 2 weeks for me to be approved for the drug, and with assistance my co-payment is $0! My cardiologist is at Emory in Atlanta, Ga.

Linda, Volunteer Mentor | @walkinggirl | May 3 8:33am

In reply to @dconner "Just started on 5 mg of Camzyos yesterday. Of course it’s too early to see any..." + (show)

@dconner Hello, again, @dconner! I see you posted here as well as in the "Introduce Yourself" thread. I am really hoping Camzyos helps you, too, because HCM is getting in the way of you living the life you want. I know that Debra @karukgirl pointed to the blog on Camzyos. Have you also been learning as much as you can about HCM? The knowledge helps us better understand what our doctors are explaining and helps us ask our best questions. Here is an article to read: https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198. I cannot give first-hand comments or share experiences because Camzyos was in the testing stage when my HCM needed medical intervention. Yes! Do keep us posted!

dconner | @dconner | May 2 8:25pm

Just started on 5 mg of Camzyos yesterday. Of course it’s too early to see any results, but hope to feel some soon. The fatigue is really bad some days, and SOB is most of the time, along with pain in left side rib area. I’m really hoping it helps. Will keep you posted.
I’m a 65 year old man and was diagnosed on December 29th of last year.

janeal99 | @janeal99 | Nov 13, 2025

In reply to @boatsforlife "Hello @marigold13 . I can't remember precisely what I have said over the 15'ish months so..." + (show)

@boatsforlife

Hello @marigold13 . I can't remember precisely what I have said over the 15'ish months so I hope I don't contradict myself too badly. I do have obstructive HCM, and met the other criteria (age 59 at the time) so I was eligible for Camzyos, which has eliminated every single one of my symptoms. Pre-Camzyos, however, I would get badly winded walking a few blocks on flat ground, climbing a single flight of stairs, or even bending down to tie my shoes. Also, chest pain, dizziness, deafening heart pounding in my ears, fatigue - the works. What I thought was weird at the time, but have since learned that some of the other HCM'ers here had similar experiences, was that if I ate ANYTHING within a couple hours before those non-strenuous activities, the symptoms would be way worse. I would need to stop to rest a couple times on the stairs, or stop and lean on something after half a block of walking (so I wouldn't topple over), or rest for 5 minutes between left shoe and right. I had to plan my morning routine between shower, dressing, teeth, etc so that I wouldn't have to do stairs more than once. And I took to wearing my outside shoes in the house all day. I did find that I could eat something like one granola bar and it wouldn't make things too much worse, but nothing more than that. So I could either eat normally and have a hard time even getting out of the chair, or I could eat only enough to keep hunger pangs at bay, but be able to climb the stairs with only one rest stop. Over the period of about (I think) 12-16 months, I went from about 195 to 165 pounds strictly because I was eating so little. It certainly wasn't due to any exercise! Fast forward to Camzyos, and all of that has changed. I have (unfortunately) gained about 15 pounds of that back again and my only excuse is that I have resumed my role as the poster child for lazy. One more comment is about my use of the word fatigue: For me fatigue did not mean feeling like I needed more sleep - I hardly ever felt that. Rather, it meant feeling like I had done a huge workout (as if!). I had to lie down and not fight to move my arms or legs, each which felt like they were 200 pounds of deadweight. Does any of this sound like you? I hope you can find an effective treatment for your dizziness and all the rest. I remember too well how debilitating that became for me.

Jump to this post

@boatsforlife thank you for your response to my earlier post.

I've been scrolling the posts and this one caught my eye. Prior to starting my Camzyos journey, I had been experiencing the same kind of shortness of breath after eating. It was terrible. And as in your case, it didn't have to be a large meal. Eggs and toast would do it. I was having a hard time functioning. This went on for 2 years. The most frustrating part was that everyone listened, shook their heads, and said they'd never heard of anyone having similar experiences with HCM...

Debra, Volunteer Mentor | @karukgirl | Nov 13, 2025

In reply to @janeal99 "Hello everyone. I'm a 69 year old male. I've been on Camzyos 5g for 4 months..." + (show)

@janeal99 welcome to Mayo Clinic Connect. I'm glad you found this online support group, and sure enough, @boatsforlife has responded to you with his usual stellar advice. He's been on the Camzyos road for awhile and had a few speed bumps on that road...but he has given out sage advice based on experience and wisdom.
I echo his sentiments and would for sure bring these new symptoms up to your cardiologist and or your pharmacist...this drug can be a wonder drug for many, and for some they can't tolerate the side effects.
We are all different and respond differently to the same medication. I did not take Camzyos, I went straight to a septal myectomy, with zero regrets.
It's good you are paying attention to these symptoms, and you owe it to yourself to be your own best buddy and learn as much as you can and be your own advocate.
When is your next echo? If it's out there pretty far, I'd reach out to your doctor or pharmacist for reassurance.