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Hypertrophic Cardiomyopathy (HCM) | Last Active: 3 days ago | Replies (48)
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@brumasterj thank you for your kind words! I’m glad to hear you are doing better and are out doing things again.
I am now one week into Camzyos (took my 8th pill today). I have to say the “lung tightness/pain” after eating was gone after day three and I when I go on my walks I feel less of that “constricted” lung feeling and can walk with more ease, which is just unbelievable. I can’t really explain it. I hope it stays that way or gets better with time. Fingers crossed!
Have you stopped Camzyos yet? Are you feeling any different in terms of doing stuff and in general? We have been swapping stories on here of how it is to start Camzyos and you can now shine a light on how it is to be off of it 😉
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Yes with me i niticed a differnce with being on camzyos within the first week
It kept improving each week
As i got stronger.
Once i got the ok to get back on my bike i started slow 1/2 mile then 1, 2, 3, and 5
After about a month i was doing 10 miles per ride on even ground
Doctor gave me the ok to start doing trail at that time but no hard hills
After another month doctor gave me the ok to start doing hills, but i soon found out thise hills were taking it out of me and i had a hard time recovering! Cardiologist then told me to back off they liked my mileage but did not like me stressing my heart with the hills
Year to date i have put in over 600 miles
Last year i did just over 400
Year before just over 500
Before i started being symptomatic i was averging 2000 miles per year of mountain bike riding
Im just off camzyos last night so time will tell how
Will keep yall in the loop:)