Camzyos improved my gradient but my symptoms are not better
My cardiologist dropped my Camzyos from 5 to 2.5mg after the first month since my gradients decreased to less than 20. After 4 weeks at 2.5 my gradient is still less than 20 so I will stay at 2.5 for the next month. However my symptoms have not improved—I feel short of breath/out of breath more easily, fatigues, lightheaded at times. I was diagnosed with oHCM in September 2023, had a PFA for Afib March 2024, and I take 50mg metoprolol BID and eliquis 5mg BID. I have mild/mitral regurgitation, mild SAM, 1.8 septal thickness. I am concerned that my gradient and symptoms seem to be so disconnected—anyone have a similar experience? Thank you!
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Again. All the best to you.
Not sure your age/health/lifestyle?
But if your HCM is provoked by exercise or strenuous activity it could actually become more obstructive!
Are your echos done with any sort of stress activity? Such as body squats
It would be something to discuss with your cardiologist
And if your not being seen at a COE i would hight recommend it!
Please be aware that age is only part of the picture, I was 75 when I had a septal myectomy at Mayo. The alcohol ablation would not have been effective in my case because of the placement of the obstruction in relation to the mitral valve. The removal of the obstruction changed the course of this direction in my health. @mustang68, my home cardiologist said that "Your family will miss you" if I did not have that surgery. Also, he found that through his reading of med literature, people on Camzyos often eventually need surgery in the future.
You sure bring alot of good information to the table
When i had my heart failure back in sept and oct i was really sick and had zero energy! I really thought it was the end for me.
Dr Alsidawi at phoenix mayo told me that surgery was best for my condition but wanted to get me stronger and feeling better so he put me on camzyos,
He said that i shoukd start feeling better in a couple weeks and boy was he right!
I have been off camzyos now 10 days and have started to feel the effects of being off!
Dr Alsidawi’s office called me the day before yesterday and asked me to please please take it easy before my surgery day, he said we wanted to get you stronger before surgery so please don't go stressing your body and your heart during your bike rides
I cant say enough about Dr Alsidawi and his team at phoenix mayo!
They are the perfect models for great health care!
Thank you. I feel like the med isn’t helping me much. It’s been a frustrating year. My gradient at rest is low but I believe I am super dynamic with the obstruction. Did you feel better after the surgery was completed and you were healed?
Oh, yes! a THOUSAND times yes! I would probably no longer be here had I not had the surgery; my obstruction had suddenly become larger and well, more obstructive. I was out of breath whenever I exerted myself physically. I had always been an active person, and my quality of life was severely impacted. As you are researching and thinking about your next steps, do read as many of these HCM posts as you can. There is a huge "club" of us who have been through this.
You bring so much to our discussion as well; our collective knowledge and experiences are interesting and very informative. Those reading the comments will quickly find out that we are all different. Although we all underwent basically the same steps before and after surgery, there are so many variables whereby each of our symptoms, surgery, recovery and the rest of it are unique. Above all, your extremely positive attitude, good physical shape and desire to get back to your old life makes you well prepared. Do remember that in recovery, there is no timetable.
Hi, I’m on Camzyos 10mg and currently have no gradient. However I still am experiencing DOE. Has anyone experienced the same?
If your having symptoms during exertion i would guess like myself and other HCM patients your obstruction shows up the more stress you put on your heart!
My question to you would be are you being seen by a HCM specialist or at a COE center? During ykur echos are they having yku do a valsava movement or any type of body squats to see your gradient under stress?
While on camzyos my relaxed gradient was 10
And after doing about 15 body squats it would raise to 38
Hope this helps
Appreciate your response. I’m being seen by an HCM specialist. They have me doing valsalva during Echo’s but no squats. Perhaps I should subtlety recommend I do at my next Echo