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DiscussionFeeling 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
Replies to "Thats great news on your gradient! I do have to ask if camzyos allowed you to..."
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
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