Symptoms getting worse on Camzyos

Please contact your Cardiologist who prescribed you CAMZYOS right now and do not waist your time in anything else. He will decide if a lower dosage or take you out of Camzyos is the best for you. I wish you the best and God bless you.

Yes, same...Started 5 mg Camzyos in October and had already been on Metoprolol. Felt good for a few weeks then the room started to spin. Went for echo and doc appt, gradient was good so reduced to 2.5 mg and taking it at bedtime instead of morning. Dizziness subsided greatly. However, sleep interrupted by bizarre nightmares, heart beating in my head as I try to sleep, heart rate in the 90's (has always been upper 70's to 85). I am a type 2 diabetic. I know it's not the right thing to do but I skip breakfast and dinner often...Don't want to deal with stomach pain immediately after eating. Weight is dropping but belly protruding. Fatigue. I am pushing through it and hoping to get on the other side of it. Next echo and doc appt in early summer. I know it is discouraging...
I find that distracting myself is helpful...reading an enjoyable book, sitting a few minutes in the sun, a quiet visit to church, a nice herbal tea or steaming cup of coffee, lunch with a long-time friend, going through my phone looking at happy friend/family photos, a bouquet of flowers on the kitchen counter, sending cards to folks I know or don't know, preparing a big kettle of soothing soup, hugging an old childhood stuffed animal...
Blessings to you...one day at a time...Christina

@christine270 I just started 2 days ago on 5 mg. What you are going through sounds discouraging. I think you should get back to the heart doctor asap. Prayers for you.

I am discouraged but trying to be patient. Finally heard from Dr who is keeping me on the 5 mg. I’ll give this 3-4 more months than may opt for surgery.

Best wishes and hope it works for you and that you don’t have bad symptoms

Hello Cindy
I'm sorry to hear that. Depressing, after a promising start on the drug.
I had become very debilitated by the time I was diagnosed with HOCM 3 months ago. During my first month on Camzyos I improved noticeably, then went downhill again. My bad days and weeks are very influenced by the weather, especially humidity. When the humidity is over about 60% my breathing alters. We've had weeks of high humidity here and every single symptom got worse again. (Heat doesn't help either)
Its worth working out if that is effecting you because if it is there are things you can do things to help.

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.

@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.

There is a new FDA approved medicine called "Aficamten". Talk to your doctor as that medicine is supposed to have almost no side effects compared to Camzyos. Contact your Cardiologist right away.

Best luck to you and do not get depressed we are here praying for you.