Side Effects starting on Camzyos

When i first started camzyos i was having sleepless nights, im an early riser and late to bed, i was taking it first thing in the morning 5ish
I switched to taking it before bed time and it helped. I had those evenings in the beginning where i felt exhausted but that all subsided after some time.
If your able try and stay active bicycling, walking
I hope it gets better for you

Ask your doctor if you can take it at night at bedtime. My husband had same side affects and his doctor said he could take it at night. He still has a woozy or SOB problem when he first gets up but it only lasts an hour or two. After the third week he started feeling better and having more energy and less naps. Always check with your doctor first though!

My husband was on 5mg for a month, he had similar problems and we called to ask if he could take his Camzyos at night instead, that helped a lot. After his first echocardiogram they decided to reduce his to 2.5mg, he’s still doing very well. I hope you can get it worked out with your doctor soon.

Is it generally the case that, if one were to experience side effects, that they would show up soon after starting Camzyos? I started about 10 days ago and have had nothing major...perhaps some mild headaches when I first lie down. I am anxious about what awaits me in the days and months to come.

Good evening...Started 5 mg last Saturday. Feel fine...don't feel any different from usual so far. I try to keep busy and not think about it...I think it helps...All the best to you!

Good morning. I am just getting ready to Camzyos 5mg, hopefully today, if Fedex can get it together and try to deliver to my apartment and not the mail room, which is outside, and then complain I wasn't there to sign. Anyway, I was worried about side effects, I know if anyone is going to have them it will be me.... I am excited to start and pray I can become myself again, this has been a nightmare for the last year. I thought it was just my year to get old (I'm 63) and that this was my new normal. It took getting mad at my PCP and starting with another who did an EKG and referred my back to my cardiologist whom I had seen in 2019. She is of course did EKG, ECHO, Cardiac MRI etc. This is proving to be a very long process getting things going, no is in a hurry as I think they should be, even though they keep calling me and saying how concerned they are and how dangerous my resting gradient pressure is at 214. I just keep praying nothing happens before I can get some help. I hope you get everything worked out and back on track.

@nrshields it was recommended to me by the pharmacist to take it at night.

@bilingual84 the worst possible side effect is heart failure which would def cause SOB, for them to not be concerned is concerning. This is why, even though I'm starting this medication soon, today I hope, I am still scheduled for 2 entire days of testing and consultation at Cleveland Clinic. I feel like, with the severity of my HOCM with SAM, I will end up needing surgery. And I will do that in Cleveland, not Louisville. I think the only ones really experienced enough to over see the treatment of this diagnosis are the large centers with dedicated HCM centers. They have specialty surgeons who work as a team during surgery with each one having their own specialty. I don't think anyone here in Louisville has anything but passing knowledge of this condition. Mayo, and Cleveland are highly recommended, Cleveland is 5 hours but still a lot closer to me.

@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.

@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?