Myqorzo: has anyone tried this new alternative to Camzyos?

I am planning on starting aficamten next month. I was on camzyos for 2 years but it would accumulate on me and my EF would drop below 50 so they would stop it. This has happened several times so are hoping this won’t happen with aficamten. Have you experienced and side effects or fatigue like some do with camzyos?

https://www.myqorzo.com/
https://www.mayoclinic.org/drugs-supplements/aficamten-oral-route/description/drg-80008584
https://www.ajmc.com/view/fda-approves-aficamten-for-obstructive-hypertrophic-cardiomyopathy
Hello @jmr091805 , I posted some links for you to read, one is from the Mayo Clinic.
Aficamten is the newest drug recently approved for treating symptomatic HOCM.
Comparing Camzyos and Aficamten in my rudimentary search, revealed studies showing similar results with a slight advantage going to Aficamten for exercise capacity.

Deciding which treatment plan you embark on is up to you and your treating physician. Being educated about what you have and what your choices are can take away some of the fear surrounding HOCM.

We all know there is no "cure" for HCM/HOCM, but treatments available can reduce the worrisome symptoms and give us back a little more quality in our lives.

I had open heart surgery, and speaking for myself only...I would do it again if I had to. I was not a candidate for Camzyos as it was not available at the time. I'm so grateful for getting my life back.
We are all different, and none of us responds to medications the same way.
Have you discussed this newer drug with your doctor?

@tvickery i’m taking 7.5 at 5 at night and 2 1/2 in the morning…yes death is a significant side effect 😟 but in my discussions with my doctor, he said that they have to put those black box warnings because of the way they did the studies for the drug. They didn’t do it in a certain way that the FDA prefers, i can’t remember the difference now, but the point is that they did do all the testing in another way and as far as I know, they haven’t had any deaths from the use of CAMZYOS. Personally, I would be happy with 55 but it really depends on how you feel like mine is high gradient. It’s really high, but I feel fine. I can climb up pills. I don’t feel limited at all by my HOCM. You might talk to your doctor about adding 2 1/2 instead of another five you can do that and also spreading it out not taking it all at once. I find that better like some in the night usually the larger dose because it can make you drowsy and then the smaller amount in the morning that’s just what I’ve worked out with my doctor.

@tvickery i’m taking 7.5 at 5 at night and 2 1/2 in the morning…yes death is a significant side effect 😟 but in my discussions with my doctor, he said that they have to put those black box warnings because of the way they did the studies for the drug. They didn’t do it in a certain way that the FDA prefers, i can’t remember the difference now, but the point is that they did do all the testing in another way and as far as I know, they haven’t had any deaths from the use of CAMZYOS. Personally, I would be happy with 55 but it really depends on how you feel like mine is high gradient. It’s really high, but I feel fine. I can climb up pills. I don’t feel limited at all by my HOCM. You might talk to your doctor about adding 2 1/2 instead of another five you can do that and also spreading it out not taking it all at once. I find that better like some in the night usually the larger dose because it can make you drowsy and then the smaller amount in the morning that’s just what I’ve worked out with my doctor.

Thanks for your question. I am wondering the same thing I am on CAMZYOS 7.5 and my gradient is still 100 standing with Valsalva and 70 lying down and so my doctor wants me to try it but I’m hesitant and also I’m afraid about the transition. where you have to wash out the Camzyos for four weeks. . My LVOT is 68%.

@joanallione Just reading about your concerns of stopping Camzyos. I have had "moderate" HOCM diagnosed 1988. Started Camzyos 7/22 and about a year later ejection fraction dropped to 49% so Camzyos was 'held' due to protocol. Just wanted you to know that the 4 weeks of 'washout' wasn't frightening or terribly difficult. I was more conscious of how I felt (hypervigilent) but in reality didn't not much increase in shortness of breath until about the end of third week. Was definitely less bothersome than anticipated. I was, however, only on 5 mg at the time and in atrial fibrillation; once restarted (at 2.5 mg) my ejection fraction increased. Everyone is difficult of course, but just wanted to comment that the 4 weeks it was stopped were not terribly difficult.

https://www.myqorzo.com/
https://www.mayoclinic.org/drugs-supplements/aficamten-oral-route/description/drg-80008584
https://www.ajmc.com/view/fda-approves-aficamten-for-obstructive-hypertrophic-cardiomyopathy
Hello @jmr091805 , I posted some links for you to read, one is from the Mayo Clinic.
Aficamten is the newest drug recently approved for treating symptomatic HOCM.
Comparing Camzyos and Aficamten in my rudimentary search, revealed studies showing similar results with a slight advantage going to Aficamten for exercise capacity.

Deciding which treatment plan you embark on is up to you and your treating physician. Being educated about what you have and what your choices are can take away some of the fear surrounding HOCM.

We all know there is no "cure" for HCM/HOCM, but treatments available can reduce the worrisome symptoms and give us back a little more quality in our lives.

I had open heart surgery, and speaking for myself only...I would do it again if I had to. I was not a candidate for Camzyos as it was not available at the time. I'm so grateful for getting my life back.
We are all different, and none of us responds to medications the same way.
Have you discussed this newer drug with your doctor?

@karukgirl Once I find out more after my cardiac MRI and have my first good talk about things with my cardiologist I hope I can make a sound decision of how to proceed. I feel like meds are just putting a bandaid on the problem and at best I will be 'hoping' for doing better at bringing groceries in from the car! I have higher goals than that since I have a garden and that takes a little bit of physical effort. Right now my thoughts are to cut right to the chase and ask about the septal myectomy surgery, which might be open heart. If I just bit the bullet (if I qualify) and get it done, then maybe 6-8 months or so, I am hopefully recovered. If there are no complications. I already have a pacemaker from the last cardiology group, who turned out to be somewhat incompetent. I think they just flipped a coin between pacemaker and mitral valve repair. I did specifically express to the dr I had shortness of breath ON exertion. First clue I'd say for this condition we all share. I think I dodged a bullet at that place. The dr came in and said 'we think a pacemaker will benefit you'. WE THINK? I am still new to all this and adjusting to it.

HI @priscillaj, welcome to Mayo Clinic Connect. You came to the right place to learn from others with your same condition. It feels good to know you are not alone with HCM, doesn't it?
I'm sorry that you felt so unheard at your last cardiology group.
As you said, this is all new to you and you are adjusting to an unwelcome heart disease. I remember when I was first diagnosed, correctly, for the first time...after I voraciously started reading all I could get my hands on, I was terrified.
I've posted a couple of links from the Mayo Clinic regarding Hypertrophic Cardiomyopathy. If you haven't had a chance yet to learn about this elusive condition, these are very informative.
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
https://mcpress.mayoclinic.org/healthy-heart/medication-and-surgery-treatment-options-for-hypertrophic-cardiomyopathy/
It sounds like you are not yet sure where in the HCM process you are, but you will know more after the cardiac MRI.
I highly suggest you learn as much as you can about what you have inside your heart. That helps you be informed about your condition and helps you and your doctor to decide on the best course of action.
I would not hesitate to suggest seeking out a Center of Excellence (COE), such as the Mayo Clinic, for a second or third opinion.
If you feel your cardiologist is well educated in the treatment of HCM or if your HCM is obstructive, that's a good thing.
I was diagnosed with a rare heart condition and recommended for open heart surgery in my local town. I am ever so grateful I asked for two more outside opinions at COEs, because I would have had open heart surgery for something I did not have!
You sound like you have an open mind and are willing to explore options, including open heart surgery, to help you live your best life.
For me, I did not want to be on meds for the rest of my life, and just wanted to get it over with. Others, and rightly so, fear open heart surgery. I sure did! In my case, by the time I got the the Mayo Clinic, my heart was failing, and my HOCM was severe.
I never look back and wish I had not done it. It gave me back my life.
It's officially Spring, and garden season is open...I bet you can't wait to get your hands in the dirt. Having HCM can make the smallest chore feel like climbing a mountain, carrying 100 lb weights on both legs and your heart feels like it's in the fast lane doing 125.
You mention having an MRI, is it coming up soon?