Cardiologist just lowered my Camzyos dose from 5mg to 2.5mg but....

Hi @jmr091805,

I have been taking Camzyos 5 mg for 14 months and my echocardiograms never indicated the need to change it to 2.5 mg. I know someone who has had lowered the dosage to 2.5 mg (from 5 mg) and he is doing very well. I know it is a big burden that we have to talk to the cardiologist office then the online pharmacy on the phone with the tipical 30 minute phone call and answer the same 12 questions every month and I take it as some kind of socializing in my life (I do not have that many family or friends) so I try to be positive on this burden. The results have been amazing. From the very first week I have no longer any angina at all (I had it for 15 years, I am 65 years old). I am able to walk fast, go jogging at a moderate speed, sleep on my left side when I go to bed (before I could not even do that). Now, I have almost a normal life (other than the burden mentioned above) but overall I try not to feel stressed by feeling blessed by God that I have access to this medicine that is only available here in the USA and some parts of Canada. Other people overseas have no access to this medicine with the uncertain future about their lives.
From the beginning I have had strong faith on this medicine and if the Cardiologist lowered your dosage is because of the guidelines given by Bristol Myers Squibb Laboratory that manufactures Camzyos for our best benefit. I highly suggest you to take the "burden" as some kind of positive experience that allows you to live longer with this wonderful Camzyos that is working very well on me. Have faith in your Cardiologist who has been Camzyos trained and Certified (not all Cardiologist have the privilege of that training to prescribe this medicine). So after you start taking the new dosage of 2.5 mg per day, write down any change in your heart that you feel is bothering you that did not bother you while you were taking the 5 mg and communicate to your Cardiologist as soon as you can with no anxiety about that for at least you have a Cardiologist qualified to prescribe this medicine. I suggest you to try to put in your mind in a positive way that all will be ok, the worst thing on this medicine I notice is to let any situation to create any kind of anxiety for it appears on me (not on everyone) that any anxiety is not good for our health and may affect my heart health as well. God bless you and if you have any question, please do not hesitate to drop me a message here.

My advice is to wait and see. The same thing happened to me. I am 71 years old. After a month on 5 mg Camzyos, my gradient dropped so fast, that the protocol required the dose to be lowered. While taking the 2.5 mg, I didn't feel as good as I did on the 5 mg, I didn't feel as bad as I did on taking nothing. However, I happened to read a post from someone with a similar experience whose gradient increased on exertion per her stress echo. I requested a stress echo (not a routine echo) and indeed my gradient also increased on exertion. They then increased my Camzyos back to 5 mg and I have felt great since. Good luck. The Camzyos has been a game-changer for me.

Yes, this is very normal. Exactly my experience. Did 5 mg for 4 weeks, then to 2 mg for 8 weeks, now going back up to 5 mg. They need to tweak the dose so you feel as good as possible. My LVEF is preserved at 70%, but the gradients are up a little more than they’d like. It takes patience to travel this journey, but my NP says “you are winning”! I have made major changes to my routine-drink 2 liters of water daily, no salt, take and record b/p daily, weigh in am after voiding and record daily. Get some exercise. My HOCM is not ever going away, so I am doing what I can to make the best of it. I feel great!

Thank you for your thoughtful reply

Hi @jmr091805

You are always welcome. God bless you and I hope you feel better soon!

Good day to be alive. Sun shining and no snow predicted!
I was started on 5 mg of Camzyos in November 2024 and then after the first couple of ultrasounds I was dropped to 2.5 mg. I think this is the established protocol once positive results are evident. I was switched back to 5mg the next month since I felt so exhausted and unwell once again. My cardiologist very quickly put me back to 5mg without any questioning.
Do as mauelpo suggests and keep track of your daily condition. Have faith that the doctor will put you on the Camzyos dosage right for you.
All the best

I was told that at 2.5mg, one needs fewer echocardiograms, but at 5mg, one must have them monthly due to higher risk of heart failure.

Yes manuelpo does suggest to report right away to the Cardiologist any change in the condition such as more tired, etc. The doctor evaluates and decides if the patient needs to be back to 5 mg.

I started on 5 mg. After 4 week echo, lowered to 2.5. Just had my 12 week echo and going back to 5 mg as gradients were up a bit. The last week or so I was having a little SOB and fatigue that was gone after day 20. There’s a protocol the Dr. must follow to get you tweaked just right for you specifically. Everyone is different so be patient, do all the right things- no salt, eat a healthy diet, no alcohol, stay hydrated, get some fresh air and exercise. Your care team do their best to help you feel as good as you can. I wish you the best on this journey!

No, you need the sane number of echos in my experience per the REMS program protocol.