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

Have yku considered taking your dose at a different time of day?
I take mine at night
I was taking early in morning and found it messed with my sleep!

mustang68 I had the same problem when my dose was increased from 5 to 10 mg. I am not very consistent day to day. Some days are great with no symptoms while others have me so low energy it's hard to even get out of the chair. I have had that inconsistency all along since starting Camzyos, but my good days outnumbered the others on the 5 mg. Not so on the 10 mg. I was not only more tired, but had worsening shortness of breath, and my low energy days outnumbered the good days. After my caridologist returned me to 5 mg, I definitely improved. My echos were comparable with similar gradients on the 5 mg as on the 10 mg dose, but since I felt so much better on the 5 mg, he is keeping me at that dosage. Hope that helps.

Thank you. I will be getting my echo tomorrow and I will discuss with him. It’s been a month on the 10mg and I can honestly say I’ve only had three good day. Thank you again for sharing your experience.

You were the first post I made on this site. I mostly have just been reading and learning, so I am glad I could contribute. A month was about how long I lasted on the 10 mg. and didn't have many more good days than you have had. I got a little depressed because I thought I was just getting worse. Going back to the 5 mg was defiitely the right thing for me. Good luck with your echo. I look forward to hearing how it went.

I will let you know. Curious- what is your Valsalva gradient and septal thickness? Mine is 44mg and septum isn’t 19mm. Cardiologist say that 44 isn’t high enough to consider septal reduction and 19mm isn’t thick enough either. I’m 67 and didn’t start feeling symptoms until I was 65. So I guess I’m a late bloomer. When I did complain of feeling tired after our bike rides my wife used to say I was just out of shape. 🙂

I missed this post by you about the gradient and septal thickness. My gradient before my first dose of Camzyos (5 mg) was 59.12, and 49.17 with valsalva. The gradient after 2 months on Camzyos was 11.89, and 11.15 with valsalva. There was no change in gradient when the dose changed to 10 mg and then back to 5 mg., but I was only on the 10 mg dose for a week or less because I notified my MD of worsening symptoms. I cannot find the figure for the septal thickness on the echo report (or more likely I don't know exactly what I am looking for or how to read it!) Obviously, the Camzyos has definitely helped me. I wish I had all or mostly all good days, but I still have one or two low energy days with shortness of breath per week. I am hoping the longer I am on the Camzyos, the better that will get. We shall see. Just fyi, I was not diagnosed until age 77, but at this point in my life my arthritis keeps me from doing many of the sports I enjoyed for so many years anyway. Please keep me posted on your progress.

Hi/ Katy - well I had the echo today. No gradient at rest. Under 20 with Valsalva. So good news with respect to the gradient. I did show “cordal SAM” at rest. And I need to discuss this with him further. But I’m still tired frequently and miss doing yard work and fixing the house and old cars. I like you I am hoping that things continue to improve. I’m trying to focus on eating healthier and limiting calorie and staying positive (which is the toughest part for me) Some on the Facebook Camzyos group have seen benefit from adding Jardiance as it helps with the diastolic disfunction. I need to explore this with the doctor more. He told me he doesn’t want to add anything else to the med cocktail. He’s a great doctor but I hate traveling into NYC to see him. The COE is a big, scary and busy place. Have you joined the Camzyos Facebook Group? I hope your arthritis will improve. I’d been nice to move about in the nice weather. I will keep you posted on my progress. Please do the same. best, John

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.

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

Hi John - So glad your gradient is good. I am not familiar with the cordal SAM and do not see that anywhere on my echo, so I guess that's a good thing! I found that my septum is 16 mm and lv posterior wall is 14 mm. Camzyos hasn't really affected those figures -- they are about the same before and after starting Camzyos. I am thinking the only help for the wall thickness is the ablation surgery. I am on Jardiance since Jan 21 but it wasn't prescribed by my cardiologist, but by my endocrinologist for my A1C of 6.1. My cardiologist was ok with that, but did mention something interesting -- that he wouldn't prescribe it because he didn't think I needed it, and when my symptoms got worse on the Camzyos 10 mg at the end of February, he decreased the Camzyos to 5 mg AND told me to stop the Jardiance. Anyway, the plan for me is to stay on Camzyos 5 mg until my next echo on May 22. I added back the Jardiance, but not sure if I notice any difference either way. Thanks for your update after the echo...I was glad to hear it, so please keep me posted. I will do the same. Katy