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Symptoms getting worse on Camzyos
Hypertrophic Cardiomyopathy (HCM) | Last Active: May 1 9:30am | Replies (19)Comment receiving replies
Hi Pam, I’m Teri. I was diagnosed in Oct 2025 with HOCM with SAM. It never worked for me, did not make my sumptoms any better and the process getting it through my insurance was a monthly nightmare, it lowered my EF so much they lowered and had to stop once. I went to Cleveland Clinic and had open heart myectomy with Dr Smedira last Thursday. Still a lot of pain but seeing improvements. I have a lot of fear of what’s to come. If you have this condition and are on Camzyos, please make sure you are seen and managed by a high volume center like Mayo or Cleveland. I am 63 and refused to have the rest of my life managed by a system and medication that is nothing more than a bandaid, a very expensive one at that when the REMS program is over.
Replies to "Hi Pam, I’m Teri. I was diagnosed in Oct 2025 with HOCM with SAM. It never..."
@cash298
I’m scheduled for myectomy end of May. Nervous but can’t wait for any chance to get my life back .
I was never told that you need a “wash out” period to get Camzyos out of your system. My gradient has increased significantly and my symptoms as well. Dizziness has subsided
Can’t wait to get back to being active and happy
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@cash298 Hi Teri! You are just a week or so past your surgery! You are an inspiration because you are quickly chiming in by sharing your experience and your decision to have surgery. Hint: compare how you feel today against how you felt a week ago rather than how you felt yesterday. Progress. Which fears of what's to come do you have? Perhaps we bloggers can share our experiences to help you deal with your fears. Your story regarding Camzyos emphasizes what my cardiologist told me and what I have read from discussion contributors. Three things seem to happen: it's a wonder drug, it does nothing or it's wonderful for a while and then it is not. Your advice about care at a high-volume center is perfect! I was almost 76 in 2022 when I had a septal myectomy at Mayo and never regretted it. I hope your pain subsides quickly (I had no pain, but movement was slow). Wishing you steady recovery during the upcoming future.