Anyone take new drug Camzyos (mavacamten) for HCM?

Hello @isamac, and welcome to Mayo Connect.
I'm glad you found the Camzyos group, have you had a chance to read some of the posts?
I did not qualify for Camzyos and had a septal myectomy at Mayo Clinic, so I can't speak to your current experience and what you are going through, but I know there are a lot of other Camzyos folks who have similar stories.
I'm glad to hear you are better, that sounds promising. It seems Camzyos works differently for each person because we are all so different and unique, so perhaps going forward your HOCM will improve.
Are you an active person? Are you able to walk and exercise?

Hi,
I started Camzyos program in June at a lower 2.5 dose for first month. I was also on metoprolol 25 mg at the time. Symptoms improved somewhat but not enough.
Second month dr. increased Camzyos dose to 5 and reduced metoprolol to 12.5.
Reason being it was slowing down my heartbeat too much while Camzyos is trying to increase my heart energy overall.
I continued my third month at 5 with reduced metoprolol.
I have just completed my initial phase all with monthly echos.
I am on next phase of Camzyos “maintenance phase” with same doses.
My cardiologist will access any further changes in 10 weeks with a stress echo.
So far feeling better but not where I need to be yet.

Went to the cardiologist last week.When I first saw him last summer, my gradient was 79%. All I wanted to do was sit down and give up. As I said in my previous post, I started on Camzyos in November 2023 and seem to have found the correct dosage of 5 mg. The recent echocardiogram showed that the gradient was now 15%! The only medication different for me has been the Camzyos. Quite the impressive reduction, my cardiologist says. Wishing you all good health.

My name is Don I live in the state of New Jersey been taking camzoia's for 4 days now have no side effects go back and forth weeks for echocardiogram and see what the prognosis is thank you

A Cardiologist that is "licensed to prescribe Camzyos" (very few are licensed on that medication) can prescribe you that medicine in the USA. The medication cost around $8,500 per month so you need to have some kind of health insurance with prescription benefits plan to see if they cover it. The insurance will direct you to a mail pharmacy that will mail you the medicine as far as I understand only in the USA, but find out if they may have changed it. The medication blocks the protein that feeds that muscle heart (called septum) to grow so the muscle starts getting thinner instead of softening. I felt in only 1 week a big difference in my heart with the angina being gone almost right away but my muscle was grown 2.2 cm which is almost blocking the whole lower part of my heart so now in 3 months is 1.4 cm so I am doing better. It does require the first 3 months a monthly echocardiogram then after that every 3 months echocardiogram so the doctor can calibrate the right dosage for you (5 mg, or maybe 10 mg, etc.) the doctor will adjust the dosage for you.

I have not started Camzyos yet. I will comment on progress. I will start on 8/1/24

@peggynurse, yes I started Camzyos last September. I wish I could search for my first few posts to refer you to them but in summary, pre-Camzyos I could not climb a single flight of stairs without one or more rest stops, I couldn't bend down to tie my shoes without palpitations, dizziness, chest pain - the works. I lost something like 30 pounds because when I ate anything the symptoms were way worse - so I just quit eating. About 17 years of gradual deterioration. Within 12 days on Camzyos all of the symptoms were completely gone and my only excuse was that I have always been the poster-child for lazy. Started at 5mg and increased to 10mg. I don't feel a difference between 5 and 10, but my cardiologist is happier.

thank you so much for this information. Sounds exactly like me. And you are also on Camzyos?

Hi @peggynurse. Some 10'ish years ago, I was put on Metoprolol (no idea what dosage). Suddenly I could not stay awake more than about 6 hours. Did not matter how much I slept at night or what time I went to be or what time I woke up. After about 4 hours I would start to get foggy and sleepy, and by 6 hours I would be dozing off at my desk, or worse - behind the wheel! I ended up on short-work-days for a while until I changed from Metoprolol to Diltiazem (Tiazac). Within a week or so, my sleep situation was back to normal. Still on it today. My OHCM symptoms always included fatigue, but it was an "exhausted from a hard workout but I'm not sleepy" kind of fatigue rather than an "I just can't keep my eyes open" kind of fatigue - if that makes any sense.

Hello
Having HCM, I have been on Camzyos since November of 2023. I started on 5 mg and then in March was reduced to 2.5 mg. because I was doing so well (my cardiologist was following the BMS protocol). However, I found that that dosage was not giving me the same visible results that the 5 had done so I asked to be put back up to 5 mg. I’ve done so well. No other medication has changed.The difference is amazing in that I can now walk up hills without getting winded plus, more importantly for me I regained my joie de vivre. I see my cardiologist next week and I hope that the tests show what I feel is a huge improvement. I’m 76.
This support group has been an endless source of information and encouragement.