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Feeling tired all the time- One month on higher dose of Camzyos
Hypertrophic Cardiomyopathy (HCM) | Last Active: Apr 1 5:24pm | Replies (13)Comment receiving replies
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
Replies to "Hi/ Katy - well I had the echo today. No gradient at rest. Under 20 with..."
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
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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.