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

Posted by jmr091805 @jmr091805, Apr 22 7:35pm

My Cardiologist just lowered my Camzyos dose from 5mg to 2.5mg. I started Camzyos on February 24, 2025. I had my 2nd echocardiogram and they decided this morning, based on the outcome of that echo, to lower the dosage. Has this happened to anyone else? Will I start feeling the terrible symptoms that led to me needing Camzyos due to the lower dosage? Every month it's a scramble to get the meds. I spent all day today going back and forth with Accredo and my cardiologist office coordinating and answering questions about how many pills I had left and when to schedule the next echo and will I be out of Camzyos pills before the next month's supply is shipped. I'm supposed to be keeping my stress levels down but they are up from this. And I'm pretty nervous about lowering the dosage of Camzyos and soon after again feeling like there's an elephant sitting on my chest and becoming short of breath again etc.

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stayhealthy2 | @stayhealthy2 | Apr 28 12:35pm

Try not to get so stressed dealing with the specific inquiries before refills of Camzyos. It’s necessary on the pharmacy side to assure we don’t forget essential details of taking their drug. I feel so blessed to have it that I just choose to not be bothered by answering the questions necessary to be able to continue taking it.

whidbey | @whidbey | Apr 29 1:53pm

I want to affirm your feelings about changing to a lower dose of Camzyos. If you do not feel well on a lower dose, make sure you discuss it with your nurse advocate or cardiologist since I believe they will just as easily increase your dose if you need it. Your ECHO results must have revealed that you can do well on a lower dose. More information may help you feel more secure in this reduction of medicine. Information is power.

I also want to affirm your feelings about the difficulty of monthly fighting the battle for your Camzyos, which I have absolutely experienced myself. Each month is a challenge. Once my medicine actually never arrived and I had to convince them I was telling the truth. (four weeks later, an empty ripped Rx delivery arrived with only my Camzyos paperwork!) Another time, a storm back East delayed my shipment by 5 days! This is in addition to the "dance" on the phone with the specialty pharmacy which is always a long ordeal. While not fun to have a monthly battle, I do appreciate the results I have experienced on Camzyos.

jilljan | @jilljan | Apr 30 10:42am

I get your stress! I started at 5 mg for 4 weeks then down to 2.5 for 8 weeks. Now going back to 5 mg after 12 week echo. I know they are trying to find my “sweet spot” (and yes after 6-1/2 weeks at 2.5 I was noticing my SOB and fatigue were coming back. The dosage changes are normal based on your echo. Your care team has certain criteria they must go by for dosing. After my 8 week my obstruction was no longer there and no symptoms. The obstruction has returned some along with symptoms. Due to the dosage change I will need another echo in 4 weeks. If all goes well then and I am consider in the maintenance phase, I should only need echos once every 6 mo. The ordering and delivery of meds has caused me severe anxiety which I never had prior to this. Issues all 3 times so far with delayed delivery. They are supposed to ship again today. Maybe it will be here Friday. I can live with the visits with customer service and the pharmacist (yes, it is a pain), but Camzyos has given me my life back. I couldn’t make the bed without resting after doing 1/2 of it. I wish you patience and health on this journey! ♥️😊