Myqorzo: has anyone tried this new alternative to Camzyos?

Posted by jmr091805 @jmr091805, Feb 12 9:58pm

Myqorzo: has anyone tried this new alternative to Camzyos? What do we know about it so far? I have been taking Camzyos since my HOCM became obstructive in January 2025. It's not perfect, but the stories I've heard about the various surgical and chemical-surgical options make me worried about those procedures for me, especially because I have other major health problems.

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Profile picture for Debra, Volunteer Mentor @karukgirl

@joanallione hello!
I had open heart surgery. Septal/papillary myectomy at the Mayo in Rochester.
Best decision I ever feared making.

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@karukgirl My dr is starting me on myqorzo first since they want me to try meds (per nurse ) before going on to surgery. my mitral valve is supposed to be a moderate regurg and I think no SAM. I'll see how it goes. I also get fatigue/weakness and low blood pressure (occassionally?) and shortness of breath after eating if I am exerting too much. Takes almost 2 hours for that to settle down. I am 72 and quite healthy enough for the surgery.

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Profile picture for Debra, Volunteer Mentor @karukgirl

@joanallione hello!
I had open heart surgery. Septal/papillary myectomy at the Mayo in Rochester.
Best decision I ever feared making.

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@karukgirl - does open heart surgery (of various kinds) treat only symptoms? or more? Thanks! Joyce

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Profile picture for priscillaj @priscillaj

@karukgirl My dr is starting me on myqorzo first since they want me to try meds (per nurse ) before going on to surgery. my mitral valve is supposed to be a moderate regurg and I think no SAM. I'll see how it goes. I also get fatigue/weakness and low blood pressure (occassionally?) and shortness of breath after eating if I am exerting too much. Takes almost 2 hours for that to settle down. I am 72 and quite healthy enough for the surgery.

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@priscillaj, that sounds like a reasonable plan.
I was diagnosed with severe SAM and severe MR (mitral regurgitation) and was also planning to have a valve replacement during my septal myectomy.
Well guess what?
Once they got the septum reduced, the LVOT outflow decreased and the mitral valve was fine.
Thank goodness!
I only mention this because with HOCM, there are so many other issues that coincide with the symptoms of the HOCM.
Fatigue, short of breath with little to no exertion , and rapid, pounding heart after a big meal are hallmarks of HOCM.
I'm glad you are otherwise healthy! That is a blessing going forward. No matter if you choose medication or surgery...being otherwise healthy will help you so much.
When do you start this new drug?

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Profile picture for joycehocm @joycehocm

@karukgirl - does open heart surgery (of various kinds) treat only symptoms? or more? Thanks! Joyce

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Hi @joycehocm, great question!!
I can only answer for myself and how it affected me after surgery. I was pretty severe before surgery, mind you.
We all know that this is a genetic disease and will never be "cured" per se...but with medications and close follow up, or a more definitive treatment with a septal myectomy, life can become so much better.
I was on beta/calcium channel blockers for several years, but it was not for treatment of HCM.
I was misdiagnosed with several different heart conditions.
None I had!
After my third consultation where I was correctly diagnosed with HOCM, I already knew the meds were not working.
Fast forward to my septal myectomy at the Mayo Clinic/Rochester:
After the required recovery time and my walking routine getting back on track I noticed right away I could walk up hills with no chest pain. Very little shortness of breath, which was such a relief! My feet didn't swell anymore.
So to answer your short question with a LONG answer...it depends!!!
It depends on you. On your pre-op health status. I was super healthy before surgery and bounced back fast.
For me I felt like a new person. I must say, I still have trouble hiking at higher elevations. That did not change much. And the horrible feeling after dietary discretion is still there.
But I just felt so much better. I felt so blessed to have this wonderful surgery in the best hospital in the world for HOCM.
I hope that answered your question, Joyce... 🙂

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Profile picture for Debra, Volunteer Mentor @karukgirl

Hi @joycehocm, great question!!
I can only answer for myself and how it affected me after surgery. I was pretty severe before surgery, mind you.
We all know that this is a genetic disease and will never be "cured" per se...but with medications and close follow up, or a more definitive treatment with a septal myectomy, life can become so much better.
I was on beta/calcium channel blockers for several years, but it was not for treatment of HCM.
I was misdiagnosed with several different heart conditions.
None I had!
After my third consultation where I was correctly diagnosed with HOCM, I already knew the meds were not working.
Fast forward to my septal myectomy at the Mayo Clinic/Rochester:
After the required recovery time and my walking routine getting back on track I noticed right away I could walk up hills with no chest pain. Very little shortness of breath, which was such a relief! My feet didn't swell anymore.
So to answer your short question with a LONG answer...it depends!!!
It depends on you. On your pre-op health status. I was super healthy before surgery and bounced back fast.
For me I felt like a new person. I must say, I still have trouble hiking at higher elevations. That did not change much. And the horrible feeling after dietary discretion is still there.
But I just felt so much better. I felt so blessed to have this wonderful surgery in the best hospital in the world for HOCM.
I hope that answered your question, Joyce... 🙂

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@karukgirl Thank you - it did. I'm glad things worked out so well!

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Profile picture for Debra, Volunteer Mentor @karukgirl

@priscillaj, that sounds like a reasonable plan.
I was diagnosed with severe SAM and severe MR (mitral regurgitation) and was also planning to have a valve replacement during my septal myectomy.
Well guess what?
Once they got the septum reduced, the LVOT outflow decreased and the mitral valve was fine.
Thank goodness!
I only mention this because with HOCM, there are so many other issues that coincide with the symptoms of the HOCM.
Fatigue, short of breath with little to no exertion , and rapid, pounding heart after a big meal are hallmarks of HOCM.
I'm glad you are otherwise healthy! That is a blessing going forward. No matter if you choose medication or surgery...being otherwise healthy will help you so much.
When do you start this new drug?

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@karukgirl I just got enrolled in the 'trial', or study, for myqorzo and a notice that I think I will pick up the med at CVS. My daughter works for a large company that tracks drur trials, etc. This is not a placebo type thing, it's tracking symptoms, inprovment, etc. It's supposed to be a miracle worker. I need to pull myself together and do the things I know I need to do, like eat how I know I should, and get to the Y. ugh! I know it all feels so good when you get in the groove.

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Profile picture for jmr091805 @jmr091805

@joanallione, I wasn't even aware of a Camzyos washout period. That does sound like it could be quite unpleasant or worse. I'm not preparing to quit Camzyos so long as it keeps working. I'm just trying to keep up with the science. Thanks for sharing your situation and making me aware of the washout period! Good luck.

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@jmr091805 good point on the subject of washout period. I don't know all the facts except that I think I read that myqorzo has a shorter half life. whether or not there is really a 'washout' period between the two would be important to know, otherwise a person is doubleing up on a med, which with these 2 meds, wouldn't exactly be a good idea!

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Profile picture for priscillaj @priscillaj

@karukgirl I just got enrolled in the 'trial', or study, for myqorzo and a notice that I think I will pick up the med at CVS. My daughter works for a large company that tracks drur trials, etc. This is not a placebo type thing, it's tracking symptoms, inprovment, etc. It's supposed to be a miracle worker. I need to pull myself together and do the things I know I need to do, like eat how I know I should, and get to the Y. ugh! I know it all feels so good when you get in the groove.

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@priscillaj , I hope all goes well on your new trial.
Since we are all so different and no two people will have the exact same response, let's hope for the "miracle" in your case!
Of course there are things that you can do to improve your overall health and quality of life, such as healthy food choices (quit looking at me pasta/chips/bread/chocolate/biscuits and gravy!) and exercising.
The best kind of exercise is the one that you will do!
I LOVE to walk. Love it so much that unless it's so cold or hot or pouring down rain or snowing, I will walk. Walking costs nothing. No membership needed to be outdoors in creation.
Walking is has the obvious health benefits, but it is also good for your emotional health.
It's like FREE therapy.
You are so right...it just feels good when you're in the groove. You know it's the right thing too.
When do you start your new med?

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I've been on aficamten 7 days. Some symptoms I've noticed at day 5/6 have started to diminish, SOB, more energy. Optimistic that this is the beginning of a positive trend. I was diagnosed in oHCM Dec 2025. Can't say enough good things about COEs - Duke Medical & Mayo Clinic. I appreciate the information shared in this group and find it very useful, enlightening and informative to keep progressing with options. Thank you,

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Profile picture for hillbilly1065 @hillbilly1065

I have been taking aficamten (Myqorzo) for a couple of years. I was in the trial. I have had good results.

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@hillbilly1065
Thank you for sharing, since you were on aficantem for a long period and thru the trial would you comment on reduction of the obstruction and if your medical care team anticipates eventually coming off aficantem?

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