Anyone take new drug Camzyos (mavacamten) for HCM?

Thank you for your thoughtful question. I am cautious as to attributing positive results so quickly as it is astounding to think that the mavacamten is already targeting the excess myosin in my heart muscle from causing forceful contractions as noted in my high EF numbers and the very high gradient pressure across my ventricular outflow tract. So, in answer to your question, by the fourth day I could briskly walk up and down the stairs in my home several times a day with no issues! I walk a few miles every day. My town has a lot of hills . I still have to slow down going up the hills but I already don't have the heaviness in my chest nor the burning sensation up my neck under my jawline. I so want this drug to work. Even though I definitively have Obstructive HCM, my cardiologist is concerned that right now my septal muscle isn't thick enough to safely have a surgical procedure and I would love to avoid open heart surgery in my future.

Hi there @nbs, how wonderful that you have a knowledgeable cardiologist guiding you in this treatment plan for your HOCM. There are more and more folks showing up here on Connect, who are just starting on Camzyos, or have been on it a little while. Everyone is openly sharing their journey to help others, so I'm glad you are here now too. Welcome! It's so classic how you eventually found out you have HOCM. From allergies to HOCM! At least you now know what it is and have an opportunity to try a brand new drug that seems to really help. Keep reading on here, there is a lot of information. You say you are in the early days of starting Camzyos, have you noticed any changes in your breathing or chest/neck pain?

Yay! That is terrific news @kelliw! It sure sounds like Camzyos is working for you. So happy to hear your report. Hoping after your visit next Thursday you will share your results here. You have such a wonderful outlook and that combined with your positive attitude is inspiring to others. By sharing with each other, even the little things, this helps the community knowledge grow. I bet you are your students favorite teacher 🙂

Four days ago I started on Camzyos. So far I have been impressed with the followup from the the assigned pharmaceutical company with their REM specialist that will be sending me the Camzyos. I also feel fortunate that I have access to Washington Univ. where they have a department just for hypertrophic cardiomyopathy. My present cardiologist had been chairman of that department and now is chairman of the cardiology dept. I have obstructive HCM. I did not see a cardiologist until two years ago as I thought that when I felt debilitated from lack of oxygen and energy while walking, pressure in my chest and burning pain in my neck was due to summer allergies and not a heart issue. The allergist I finally went to listened to my heart and told me to see a cardiologist. I was fortunate that my first cardiologist, who was planning on retiring, was aware that Wash U. was part of the Camzyos original trials and after he had me take many medical tests was confident I would qualify for the drug. It is early days but I have great hope for the success of this drug. We are definitely a small group who have qualified to take this new medication.

I have been on Camzyos for 49 days. I am feeling great now!

My exact symptoms, dizzy spin, I hope it’s just a 1 time thing, how long have you been on Camzyos?
Dave

Happy Friday! I had my 2nd ECG Wednesday, and usually the technicians don't say a word about what they see, but when she was almost done, she said wow! This must be a miracle drug because everything looks FANTASTIC! I was so happy! I go for the follow-up with the dr., next Thursday, so hopefully he will say the same thing! 🙂 My school had our Jog-A-Thon fundraiser today, and I was able to walk with my kids for the whole 1/2 hour!!! Yippeeee!!!

Hi Dave-My dizziness came on during the second or third week and last for a week or two. Now it is completely gone. One day was scary-I was in my classroom, with my students and felt like I was going to pass out. I was sitting down but the room started spinning. I was able to call the school nurse and she had me lay down on the floor with my feet up on a chair, then sit up and drink water. It went away and I didn't pass out luckily. So glad that is gone! I am going to start at 24 Hour Fitness next week too!

I see that @kelliw felt dizzy too...I would be sure to mention that at your visit. You are being so thorough here on Connect, I'm sure you have it written down someplace that on day 7 ______________ (fill in the blank) happened, so this information can be charted.
Sure glad to hear the dizziness was short lived. That would be scary if you were up on a ladder or riding a motorcycle or whatever. Take it easy @starbuck41 when it comes to lifting weights. You sound like you are chomping at the bit to get back to living life again! That's a good thing. I can't wait to hear what you decided to have for dinner 🙂

Day 8
5mg at 0807am
Weight 266lb
No coffee, but w/glass of cherry juice
I’m about to have my first cup it’s 1300.
So about 1900-2200 I felt dizzy, it could have been I didn’t eat until late, but I’m thinking “side effect”. It didn’t last long nor was it severe but it was there. dinner was oven baked fried chicken, mashed taters ..the dizziness passed and all seemed well, I did spend the day going up and down stairs doing laundry and essential household duties. Today I feel absolutely normal. I’m not sure what’s going be on the lunch/dinner menus.
So I have noticed 1 thing which has been happening every night.
1. I sleep solid
2. I wake before my alarm (0730)
I don’t set an alarm for waking I set it to take med same day every time.
3. I have vivid dreams every night, yes sometimes I had dreams but never every night.

500mg metformin to be taken at dinner, on Monday I’m going to start light weight training at planet fitness, nothing heavy but I should be able to go 30min
I’ll see y’all tomorrow
Have a awesome day
Dave