1. < Hypertrophic Cardiomyopathy (HCM)

Side Effects starting on Camzyos

Posted by marigold13 @marigold13, May 12 11:43am

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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manuelpo | @manuelpo | May 13 8:20am

Side effects on me were gone in 2 weeks but gradually. I had patience and I was in close contact with my Cardiologist office for that who helped me a lot.
I hope it works for you for I have no longer angina and I can perform all my normal activities at my age 65 years old.
God bless you and good luck to you.

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marigold13 | @marigold13 | May 13 12:38pm

I did call them, and he seemed to accept my side effects, but it's been quite overpowering and the shortness of breath even while laying down, continuously going on while doing nothing, is concerning. The worst of it seems to hit me about 4 hours strongest after I take it, the dizzy/woozy, SOB somewhat comes in spurts, but then later when these effects wear off, the SOB lingers. I woke up SOB and decided not to take it today, and I will call them again. I've been housebound since starting. We were all going to do to the nursery to buy some rose plants on Mother's Day but I couldn't. The only time I feel SOB prior to Camzyos is upon exertion. Like vacuuming or stairs. But this kind of SOB while doing nothing is new. I feel like I can't keep at it. I don't have any chest pains. Never have. Thank you for the reply.

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1 reply
bilingual84 | @bilingual84 | May 13 1:29pm
In reply to @marigold13 "I did call them, and he seemed to accept my side effects, but it's been quite..." + (show)
@marigold13

I did call them, and he seemed to accept my side effects, but it's been quite overpowering and the shortness of breath even while laying down, continuously going on while doing nothing, is concerning. The worst of it seems to hit me about 4 hours strongest after I take it, the dizzy/woozy, SOB somewhat comes in spurts, but then later when these effects wear off, the SOB lingers. I woke up SOB and decided not to take it today, and I will call them again. I've been housebound since starting. We were all going to do to the nursery to buy some rose plants on Mother's Day but I couldn't. The only time I feel SOB prior to Camzyos is upon exertion. Like vacuuming or stairs. But this kind of SOB while doing nothing is new. I feel like I can't keep at it. I don't have any chest pains. Never have. Thank you for the reply.

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@marigold13 I am so sorry you are going through this. I am one week into Camzyos (took my 8th pill today) and have not experienced anything like you’re describing, but was told by my cardiologist if SOB appears I have to let them know immediately as it’s a sign of the drug having an adverse effect on you which can lead to all sorts of things. I am no doctor, but I feel that even the doctors don’t exactly understand how we feel and if you feel worse (as you’ve said you’ve never had SOB while idle) then you should make it a point to report that to them again. Maybe your dosage is too high or maybe it interacts with what you’re already taking (I don’t know if you are taking anything. I am on beta blockers 5mg + Camzyos).

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1 reply
brumasterj | @brumasterj | May 13 2:31pm

I know everyone experiences camzyos differently!
There’s definitely more information coming out for people to view online I made a couple of YouTube videos from my experience for the first couple months. I just took my last dose of Camzyos in preparation for septal myectomy camzyos definitely was a game changer for me allowed me to get back on my bicycle and put some miles in, but it has his drawback after experiencing multiple heart failures and then finally being
Diagnosed with HCM can help me get back into the game although I still had an obstruction that would show in space when I would stress my heart I think for the average person that just does walking and stuff like that comes house is great but if you’re one it gets after it Comes out, definitely has his limitations. Best of luck to you on your treatment.

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marigold13 | @marigold13 | May 13 3:18pm
In reply to @bilingual84 "@marigold13 I am so sorry you are going through this. I am one week into Camzyos..." + (show)
@bilingual84

@marigold13 I am so sorry you are going through this. I am one week into Camzyos (took my 8th pill today) and have not experienced anything like you’re describing, but was told by my cardiologist if SOB appears I have to let them know immediately as it’s a sign of the drug having an adverse effect on you which can lead to all sorts of things. I am no doctor, but I feel that even the doctors don’t exactly understand how we feel and if you feel worse (as you’ve said you’ve never had SOB while idle) then you should make it a point to report that to them again. Maybe your dosage is too high or maybe it interacts with what you’re already taking (I don’t know if you are taking anything. I am on beta blockers 5mg + Camzyos).

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Thank you. I told him last week I had SOB episodes, but it got worse as this is building up in my system. Since it has a 9 day 1/2 life, I felt I better back off. I've not called them today, but I will tomorrow. Was on Metoprolol prior and he took me off day before. So IDK if that has something to do with it, because my resting heart rate went from 70 avg to 85 avg and I wonder if that contributed to SOB. He ok'd a 1/2 dose once a day and it did feel better. My BP also spiked. About 145-155 /90-100 to 170/180 over 120. Had fierce pounding in my head too. Metoprolol brought it down to 155/95 70 hr. Got a couple episodes of out of the blue high pitch tinnitus, too. I kept taking thinking it's just an adjustment, and I know it was doing 'something' positive but these side effects are too much for me. The SOB is def my concern as I had it constantly as of the last day. Got it everyday at some point but was hard to get to sleep last night and waking up with it was a concern. As of this moments the SOB has gone way down, but I still don't feel good. I'll def call them tomorrow. Taking 5mg. I'm a petite short person like 90# and he already said no to 2.5. I must start on 5mg since that's the protocol. It def felt like too much for me. Maybe the 9day half life has something to do with it. Thanks so much for your reply.

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1 reply
whidbey | @whidbey | May 15 3:42pm
In reply to @marigold13 "Thank you. I told him last week I had SOB episodes, but it got worse as..." + (show)
@marigold13

Thank you. I told him last week I had SOB episodes, but it got worse as this is building up in my system. Since it has a 9 day 1/2 life, I felt I better back off. I've not called them today, but I will tomorrow. Was on Metoprolol prior and he took me off day before. So IDK if that has something to do with it, because my resting heart rate went from 70 avg to 85 avg and I wonder if that contributed to SOB. He ok'd a 1/2 dose once a day and it did feel better. My BP also spiked. About 145-155 /90-100 to 170/180 over 120. Had fierce pounding in my head too. Metoprolol brought it down to 155/95 70 hr. Got a couple episodes of out of the blue high pitch tinnitus, too. I kept taking thinking it's just an adjustment, and I know it was doing 'something' positive but these side effects are too much for me. The SOB is def my concern as I had it constantly as of the last day. Got it everyday at some point but was hard to get to sleep last night and waking up with it was a concern. As of this moments the SOB has gone way down, but I still don't feel good. I'll def call them tomorrow. Taking 5mg. I'm a petite short person like 90# and he already said no to 2.5. I must start on 5mg since that's the protocol. It def felt like too much for me. Maybe the 9day half life has something to do with it. Thanks so much for your reply.

Jump to this post

Please stay in close contact with your Cardiologist and patient advocate. After one year on Camzyos, I am experiencing amazing results. I do want you to know that I had a few "blips" like you are experiencing and my nurse advocate was super helpful balancing my meds. I stayed on Metoprolol and have even increased the dose to balance the increase of Camzyos. I am now on 15 mg of Camzyos and feel better than I have in years. It is concerning that you are short of breath. I hope you get some answers soon and feel better.

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marigold13 | @marigold13 | May 15 7:30pm

Hi, Thank you. Yes, the SOB was concerning for me. I wondered if stopping Metoprolol abruptly may have contributed to it, because I thought the SOB might be coming with my increased heart rate. So adding it back in helped but the SOB did not get alleviated. I felt towards the last day of taking on Monday, that it was building up in my system and it was too much for me. I worried about the heart failure side effect. Lowering to 2.5 wasn't allowed as it goes out of protocol. When I woke up feeling SOB another morning, which was Tues, I decided that's it, I can't take another pill, I need to back off. Wed still had a bit of SOB, and today is Thursday and not feeling SOB at all. I'm SO glad, but I do feel like it's still in me. It's been a disappointing experience. I think I might've stuck it out longer if the SOB wasn't issue. Thank you.

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