← Return to Side Effects starting on Camzyos

Discussion
Comment receiving replies
Profile picture for marigold13 @marigold13

@cash298 Yes, initially I was to see one of the long-time docs but then they brought in someone new to handle the Camzyos program. He told me he'd start me on 5mg. After some time I had to call to find out what was going on and they had over-looked my file so they got the ball rolling. When it was delivered it was 10mg. I called and the nurse said she'd ask the doc and he said no, he spoke of 10mg then they evaluate and go up or down, but he has to start all patients on 10. Both my husband and I clearly remember him saying 5. Well as I said in my initial post, I could not handle it, and yes, because of that ultimate side effect of heart failure, and this SOB I experienced and overall feeling, I stopped it, because it does have a long half life in the body. I feel I know myself better so I had to do it. I wish it turned out different. And no, he would not lower the dosage. I don't know if weight of a person means anything but I'm a petite woman at 95 lbs. I feel like this condition has ruined my life and he even said I might be too frail to get a surgery. He is a young doctor and I wonder if it's his first on the job experience, I really don't know, but I'm seeing another practice soon. This place is too large, too many docs and appts are no less than 4-6 months out. You cannot just call and make an appt. My new appt is only a month out, but that's better.

Jump to this post


Replies to "@cash298 Yes, initially I was to see one of the long-time docs but then they brought..."

@marigold13 Wow, they told me they start almost everyone on 2.5mg but in my case with gradient so high they wanted to start 5mg. I dont really trust too much either.
I would recommend seeking out Mayo or Cleveland, they have the most experience. Even though I am working with Louisville docs right now I am still going to go to Cleveland for all the testing and consults in March.
I just started the Camzyos last night, how long before the side effects start?