Feeling tired all the time- One month on higher dose of Camzyos

Hey John,
My septal is 19 and posterior is in normal range.
At least thats what i was told.
Im symptomatic for sure the harder i go the more the symptoms show up.
I’m just glad i finally got answers to my symptoms after years of aggregated workouts!
Come June they say im gonna be a new young man
I have always been told i have a hardened heart now i know i truly do:)
Best of luck to ya and i hope you are able to try the new meds soon.

Hi Brumaster. I have been following your posts for quite a while, but didn't know about the problem staying in the Camzyos program. Just fyi, I have been on Camzyos since October of last year and have never heard anything about not being able to stay on the program. My gradients have steadily improved from 59 mmHg down to the 11 - 12 mmHg area. It seems to make sense to me that if you improve your gradient, they would want you to continue...but what do I know about these pharma companies and all the different programs they have. Hope you get to stay on it. Keep posting on your progress.
Katy

Hey Katy
Thanks for the response
Yes, I had my ultrasound done last month and the technician said in order to meet the requirements for the REMS program need to be over 30 so she had me doing squats and I didn’t take much about 10 or 15 squats and recheck me i was 38
I did not talk to the doctor about it That information came from the gal that did my ultrasound. I will come off Camzyos in May for my septal myectomy
Now it could have been to stay on 5mg and not change doseage!
So i could be leading people astray with false information!
i should have talked to the doctor about that comment
Again it could be based on each different case?
Glad its working for you and so many others:)

Same problem!!! I started camzyos in January and noticed a huge change in my fatigue at 6 weeks. I felt like a new person! It started to taper off in the next 6 weeks and at 3 months doc increased my dosage to 10 mg. Thought I would bounce back but it's been 5 weeks and still no change in fatigue! No other signs of heart failure just horrible fatigue - I get up take care of my dog watch the news scroll my email and am ready for a nap. Praying this will change soon but happy I'm not alone.

It is incredibly depressing for me - would love to travel but fatigue is very limiting- hope my appt 4/28 with specialist answers some questions
You are right; very helpful to know we are not alone

@bbisno You have written on other blog threads and as you can see, you are far from alone in having particular symptoms. While you have an appointment schedules, sometimes it's possible to get an earlier appointment because of a cancellation. Two ways are available that can make that happen. One is to get on the cancellation wait list. The other is to call just about every day, if a cancellation happens, it's easier to put your name in the time slot rather than search for the list, call the person, if no answer, call the next person....

Aware and engage in both ways - was able to move from June to April using call approach- conference for cardiologists week before my appointment which my doc is attending so assume 4/28 is it for me. Do continue to call every week.
Thanks for your continued assistance.

Hello. I did write on another thread here how VitaminB12 made such a difference for me. I’m on 5mg of Camzyos and was still feeling very tired. Although the Camzyos had made a great difference, on one of my recent blood tests the doctor found that my vitamin B 12 was low and so I started taking it daily. I no longer feel so dragged down. Perhaps you could give it a try. You can buy it over the counter.
All the best, be well.

In February 2026 my cardiologist started me on Camzyos 5mg. After a couple of days I could feel that the Camzyos working great I was able to do my shift clean up with more energy than I was before it's like I finally came alive and was enjoying every minute of it. Well at first my insurance wouldn't cover it (Humana). I received a letter from them and they stated it would not be covered. So I exercise my right to appeal their decision which I did and they said they would cover it but I had to do the smaller dose 2.5 mg so my cardiologist ordered the smaller dose. After taking the smaller dose for a week I noticed it wasn't working as good as the 5mg dose was. I started feeling fatigue as before. I was smoking medical marijuana. My husband appealed to me to stop smoking it. So I haven't smoked any for awhile. Then one day I was up cleaning house, washing clothes and other cleaning duties with more energy than I never dreamed I would have and still to this day I feel energized more than I thought I would ever feel I also have to take pain meds for chronic pain and it still works great. I do have more energy now, than I ever had. My father had the same problem with his heart ❤️ . My sister talked to a cardiologist about what was going on with me and he told her that she probably needed to have her heart looked at because what my dad had and what I had was hereditary. I'm gonna keep living life and spending more time with my family. May God bless and keep you all close to him

Sincerely,
Diana Wedel RN retired

Good Luck and God Bless you and your family