1. < Hypertrophic Cardiomyopathy (HCM)

Is Camzyos effective long term?

Posted by par4rosy @par4rosy, Mar 9 8:45am

I was diagnosed with HCM a year ago by My cardiologist and got on
Camzyos 5mg in early December 2023.
Within a week I felt so much better; was walking faster, was much less tired, chest didn’t feel constricted and wasn’t breathless. I felt excellent.
But a few days ago all the old symptoms started to come back. So disappointing.
Wondering what my next steps should be?

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nanakpm | @nanakpm | May 18 4:27pm
In reply to @manuelpo "After FDA approval, camzyos has only been available for 2 years and 1 month. The approval..." + (show)
@manuelpo

After FDA approval, camzyos has only been available for 2 years and 1 month. The approval required a lot of testing due to the side effects can be too risky for some people. I do not think anyone other than a Cardiologist with that much 2 year 1 month experience on this medicine can accurately predict how long it will take. The pressure, the size of the septum and other factors in each one's hearts is very different and unique. So I do not think anyone can predict how long it takes unless there is someone who was treated and successfully say " I took camzyos for .... years or months and I do not need it anymore". All I know is that this medicine is wonderfully working on me and I am willing to take it till my last day on earth. I hope everyone is successful on this camzyos treatment. I am very happy with camzyos.

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I started at 5mg a year ago and felt better but echo did not improve. I requested a higher dose of 10mg. Same story. Finally requested 15 mg after doing pharmacogenomic test which showed I’m a rapid metabolizer of Camzyos. Gradient came down dramatically. I’m no longer a candidate for surgery. And I feel so much better than a year ago. We are all at the front end of experience with this new drug.

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jenywilliams | @jenywilliams | May 19 12:10pm

I'm an 81byr old who was diagnosed with HCM MAR 2023
STARTED WITH camzyos that month at 5 mg and now at 15
No more side effects for me and I am so blessed
Now been on over a year and just saw cardiologist who says my heart is behaving so keep dosage the same
I'm going to PT TO REGAIN LEG STRENGTH. I FOUGHT CANCER AND WON BUT THEN DEVELOPED HCM. HOPE I CAN MORE CLOSE TO NOMALCY AND SO THANKSFUL FOR MY Dr and camzyos.
Jeny

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kelliw | @kelliw | May 23 11:27am
In reply to @susanml "Good day I started on 5 mg of Camzyos in December 2023. I really felt well..." + (show)
@susanml

Good day
I started on 5 mg of Camzyos in December 2023. I really felt well with this new medication and my results proved likewise. Following the protocol, my cardiologist reduced my dosage to 2.5mg. However I was not feeling as well as before, on the halved dose After three months on 2.5 mg and the echocardiogram, I requested that I go back to 5 mg, which the cardiologist agreed to. I am still overwhelmingly tired and some days are worse than others. My shortness of breath has improved but not the fatigue. I’ll see if the 5 mg which I just restarted makes an improvement. I too have no idea how long I can stay on this drug, and if the dosage needs
to be periodically increased.
Be well

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Good morning! I am also feeling exhausted. Not sure if it is because I teach 4th grade and school is about to end, so very very busy, or if it is because I need to go back up to 5 mg. If I don't start to feel rested once school is out, I am going to ask to go back up before my August visit. Let me know if you start to feel better. I remember feeling SO good on 5 mg.!

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1 reply
kelliw | @kelliw | May 23 11:31am

Good morning-I am going to have surgery on my foot this summer. I am a little nervous-actually a lot nervous, about going under an anesthetic, while on Camzyos. I know I need to find out exactly what they are going to use and call the specialty pharmacist to make sure that there isn't a drug interaction, but have any of you had any surgery yet, while taking Camzyos?

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1 reply
guitar55 | @guitar55 | May 23 6:24pm
In reply to @kelliw "Good morning-I am going to have surgery on my foot this summer. I am a little..." + (show)
@kelliw

Good morning-I am going to have surgery on my foot this summer. I am a little nervous-actually a lot nervous, about going under an anesthetic, while on Camzyos. I know I need to find out exactly what they are going to use and call the specialty pharmacist to make sure that there isn't a drug interaction, but have any of you had any surgery yet, while taking Camzyos?

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Hi Kelli: retired teacher from Philly here.been on cameos 3 months and getting increase to 10 mg this week.your comments have been helpful to read.i need to get a colonoscopy this summer and my cardiologist said he would clear me for it when I am ready.i am waiting to see how I will react to 10m.

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susanml | @susanml | May 29 8:41pm
In reply to @kelliw "Good morning! I am also feeling exhausted. Not sure if it is because I teach 4th..." + (show)
@kelliw

Good morning! I am also feeling exhausted. Not sure if it is because I teach 4th grade and school is about to end, so very very busy, or if it is because I need to go back up to 5 mg. If I don't start to feel rested once school is out, I am going to ask to go back up before my August visit. Let me know if you start to feel better. I remember feeling SO good on 5 mg.!

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I feel so much better now my dosage has been increased back to 5 mg though my blood pressure hovers around 150. Teaching and your HCM are all ample reasons for your fatigue. Go and see your cardiologist sooner. Be well.

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1 reply
kelliw | @kelliw | May 29 10:54pm
In reply to @susanml "I feel so much better now my dosage has been increased back to 5 mg though..." + (show)
@susanml

I feel so much better now my dosage has been increased back to 5 mg though my blood pressure hovers around 150. Teaching and your HCM are all ample reasons for your fatigue. Go and see your cardiologist sooner. Be well.

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Thank you Susan. I have been feeling dizzy since last night, which I haven’t felt since before I went on Camzyos. I am super stressed right now with school ending and my in-laws taking a sudden down turn, but thank you for encouraging me to let my cardiologist know. I need to. I so love this group for the support and encouragement . Thank you! I needed you tonight.😊💗

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daffodilly | @daffodilly | May 30 10:49pm

I am new here. I am surprised no one has discussed the cost of camzayos. Medicare out of pocket max for one year is $8,000. My dr has recommended it, but cost is prohibitive. Are people opting for this because beta blockers are not working?

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stayhealthy2 | @stayhealthy2 | May 31 12:08am

Check with pharmaceutical company (Bristol Myers Squibb) for options-there are financial assistance arrangements they can refer you to.

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mustang68 | @mustang68 | Jul 9 2:39pm

Hi. I have been on Mavachemten for 10 days (5mg). No change in my symtoms. Does anyone know how long it takes to kick in?

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