1. < Hypertrophic Cardiomyopathy (HCM)
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Feeling tired all the time- One month on higher dose of Camzyos

Posted by mustang68 @mustang68, Mar 26, 2025

Hi. 67 yo male. Obstructive HCM. During my last Echo my cardiologist increased my Camzyos does to 10mg as my gradient had come up (I am dynamic). Its been almost a month- my next Echo is 3/31. I have felt more tired on this higher dose daily (with a three day in a row break last week). But dragging every day. No signs of HF (no weight gain, shortness of breath etc). Has anyone else experienced this side effect from going to the higher dose? I had no side effects on 5mg- but i remained symptomatic (but not as tired as I am now). some have told me that this will go away eventually for us 'slow responders' but its been quite the battle day in and out. thanks! Appreciate any thoughts feedback.

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brumasterj | @brumasterj | Apr 1, 2025
In reply to @mustang68 "Yes. I read that too. But I am dynamic. I don’t know what do believe because..." + (show)
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Yes. I read that too. But I am dynamic. I don’t know what do believe because my echos change and every tech who does it is different. For example, my septum showed 21mm and last month it was 19mm. I think the thing. She also show ‘cordial SAM’ where the ‘heart strings are moving into the outflow tract but not causing an obstruction. I keep asking them to do the squat to stand manuver as this would trigger the dynamic nature of my obstruction. Anyway, it appears- at least at this point- that my symptoms may be more related to my diastolic dysfunction which they say will take a longer time to see benefits on mavachenten. I am hopeful that I can switch to Afichemten. Which is supposed to be available for obstructive and non-obstructive. But what do I know?! I just pray this condition even out of all of us. Please enjoy the day and thanks for listening to me. When you get a chance, ask them to tell you what the septum thickness is and the posterior wall. I may ask to have Jardiance added to my med cocktail as it is supposed to help further with diastolic dysfunction. All the best, John

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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.

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katydid333 | @katydid333 | Apr 1, 2025
In reply to @brumasterj "Thats great news on your gradient! I do have to ask if camzyos allowed you to..." + (show)
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Thats great news on your gradient!
I do have to ask if camzyos allowed you to stay on the program with a low gradient!
I was told if its below 30 with a valsalva that they would mot approve for the next prescription refill?
Maybe each case if different!
This was told to me last time i went in my valsalva was less than 30 so they had me do a few body squats which increased the gradient to 38.

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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

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brumasterj | @brumasterj | Apr 1, 2025
In reply to @katydid333 "Hi Brumaster. I have been following your posts for quite a while, but didn't know about..." + (show)
Profile picture for katydid333 @katydid333

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

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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:)

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sassyrdh329 | @sassyrdh329 | 1 day ago

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.

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bbisno | @bbisno | 11 hours ago

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

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Linda, Volunteer Mentor | @walkinggirl | 7 hours ago
In reply to @bbisno "It is incredibly depressing for me - would love to travel but fatigue is very limiting-..." + (show)
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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

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@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....

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bbisno | @bbisno | 6 hours ago

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.

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