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Side Effects starting on Camzyos
Just starting 5mg. First day I got really woozy an hour after, stayed in and out of that for maybe 4-5 hours, but evening felt better but felt a bit short of breath. 2nd day was better, still a bit woozy but not for long. Felt tired took a nap, felt better in the evening but again SOB. 3rd day was the best day but then late afternoon I began to get woozy and SOB. No SOB on exertion but in general. Also was told to stop Metoprolol before starting Camzyos. During the week I did notice my heart rate going into the 80s, I prefer in the 70s, feels better. BP started going up, too. Called the doc on Thursday and he said I could revert to 12.5 Metoprolol once a day and that helped. But each continuing day the woozy was ruining my day along w/the SOB feeling. Felt the need to breath deep almost all day. Best time of day was the late evening. But over the weekend I just felt like it was becoming too much, and it ruined my Mothers Day. Not seeing many posts here about being unable to handle side effects. Anyone else? Thank you.
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@cash298 Also, let me add, I am a DNP and I have been in all the hospitals in Louisville..... eek, there is no way I would have surgery here unless its was a dire emergency.
@brumasterj I took my first 5mg dose last night before bed, I was awake every hour feeling like I had been asleep for days. I ended up getting up at midnight, doing a few hours of work and going back to sleep for a couple hours. Is sleeplessness a side effect? Has anyone experienced this?
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1 Reaction@cash298 i know meds effect everyone differently!
I did have restless nights at first, and contacted my care team who had me move to taking camzyos first thing in the morning!
Reach out to you care team if it persists:)
Best of luck
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2 ReactionsCash298...Hello...Started 5 mg of Camzyos on 11/08/25. The month was mostly uneventful. A bit jumpy when I sleep but maybe my worries are getting the best of me. Blood pressures have been consistently good: 115/70.
Heart rate up a bit: 90. This week I have been dizzy a few times...not a regular kind of dizzy...more like the room around me is swirling around...odd sensation. Also very fatigued...went to work in the mornings and slept all afternoon. (I work part-time so I could go home and sleep). Had echo last week...gradiant had successfully dropped...got a good report. I am keeping on, keeping on. I hope these side effects level off as my body adjusts.
I'm being treated in Cleveland...I'm in good thanks for sure! Good luck to you...they will take great care of you!
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2 Reactions@christine270 glad to hear you are doing well! That’s great news. I’m now wondering about paying for this drug, my insurance just said they are not paying for it? What do I do now? It’s around 90000 a yr lolol
I’m sorry this terrible condition ruined your Mothers Day! So terrible. I have been three days on now, I take in evenings so mornings have been good until today, dizziness on and off, headache all three days, but no SOB yet. I am going to Cleveland in March for complete second opinion so I am looking forward to that. Hope you feel better.
I have been on Camzyos for about three weeks, 5 mg, and I was just trying to find out f the dizziness is ever going to go away, it is ruining my day every day, I cant do anything, and now I have symptoms of UTI and starting to feel SOB from doing almost nothing (putting laundry in the dryer from the washer). I cant live like this, I would much rather have the surgery. I cant wait to go to Cleveland in March.. Im sorry you feel bad, I hope it gets better for you.
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1 Reaction@cash298 just an update, Bristol Myers said if the insurance does not agree on appeal I will get it for free. So at least one bit of good news.
@cash298 , I've been reading your posts and feel so bad that you are having such a terrible time with Camzyos. We are all so different and no two people are alike and therefore no two people will have the same response.
You are an example of someone who is struggling with Camzyos and only recently began.
I am happy to hear that you have an appointment at a COE in March. That seems so far away right now. Sitting around for the next three months wondering what is going to happen next is certainly not a pleasant thought. No wonder you feel like you can't live like this.
You should not have to live like this in my opinion. Can you contact the Camzyos program through their link?
https://www.camzyos.com
I read on the site that you should call your provider right away if you experience any of these symptoms:
Get medical help right away if you experience new or worsening symptoms, including:
shortness of breath
chest pain
fatigue
racing heart (palpitations)
leg swelling
rapid weight gain
They also provide the FDA and BMS to contact:
Talk to your healthcare provider for more information about side effects. You may report side effects to FDA at 1-800-FDA-1088. You may also report side effects to Bristol Myers Squibb at 1-800-721-5072.
You have been a trouper being your own best advocate, but you certainly are not having a typical time here on this for only three weeks.
You need to keep pushing until you get answers. Camzyos is NOT for everyone!
Can you contact the prescriber again?
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1 ReactionIs anyone else considering surgery instead of staying on this edication forever with all the crazy side effects? I have been on Camzyos for a month, dizziness is crazy, and a UTI, which my Drs told me I am crazy and that it is not possible to get UTI as a side effect, I told them it is a 2 sec serch to find out that FDA is doing a study on it due to so many reports of this, and thats only from those who reported it, I absolutely did. I am going to keep putting up with this team until after March, then Cleveland Clinic can take over my care. Im afraid they will kill me before then. ugh
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