Anyone take new drug Camzyos (mavacamten) for HCM?

Hi @jenywilliams, welcome to Mayo Connect! You have come to the right place to share your story with other HCM/HOCM folks who are on Camzyos. I'm happy to hear you are showing improvements in your energy and the shortness of breath is better. Sounds like you have been through quite the battle. Cancer, chemo and now this heart issue. But here you are! You sound like a positive person and that sure does make a difference in our mental health as well as physically. It is super important that your cardiologist is up to date with HCM and Camzyos. It's also important that you learn as much as you can about your condition so you can ask the right questions and be your own best advocate. How often do you see your cardiologist? Have they noticed changes in your echo?

Hi Folks, I am on Camzyos Day 8. Sunday I was a little lightheaded. I walked a couple of miles on Saturday and I think my heart said — are you crazy. Still have not heard back from my Dr. But, today I feel better. So I am taking it easy.

Thanks to everyone for taking the time to let me know your symptoms.

The journey continues.

I'm a camzyos user 14 weeks of taking the drug. At the 12 week time, the drug was working but my heart doctor said we should try 10 mg. I had hives slight case that lasted 2 hours. My energy level is good and breathlessness is decreased. I am delighted and thankful for my improvements. I have a genetic heart defect with a hardened area. It was not an issue until a battle with cancer and chemo treatments. SO GRATEFUL

5mg Camzyos 0900
50mg metropolol
Weight 268.6
12oz coffee
16oz Sprite Zero
No side effects but I’ve only been taking a couple days after being off several.. I feel good, is it the beautiful weather combined with out the shortness of breath perhaps lol.
Dinner tonight is gonna be fajita salad, hopefully my Camzyos will be here by Tuesday as I’ll be out of meds.
I’m not sure these interruptions of even a day or two are going to yield good data, but here’s hoping..
Have an awesome day I’ll hollar at y’all tomorrow. One thing I’ve noticed I dream every night since starting Camzyos perhaps I’m reaching and staying in REM sleep.. side effect?

David

Dizziness was a symptom for me as well during the first couple of weeks (also a little intermittent nausea. Thankfully that has completely disappeared. I am 5 months on Camzyos now and have nothing but positive comments about this medication. Hope for the same for you 🙂!

Hopefully you won't have any side effects. 🙂 The dizziness was intermittent. Sometimes happened when I was driving-ugh, and in my classroom, a few times on a walk, but it would pass. My doctor said to drink lots of water and take deep breaths in and out. It helped. I was so happy when it passed. One time I got so dizzy in my classroom that I felt like I was going to faint. My principal and the school nurse came and she had me lay down on the floor and put my feet/ up on a chair and take deep breaths. I sat up and drank some water and it all passed. Not great in front of my students, but luckily never happened again. I'll take the dizziness over gasping for air any day though! 🙂

Thanks so much for these very helpful insights. I am on Day 6, and so far so good. But it’s great to know something could happen later.
Was the dizziness consistent or intermittent? What did you do to handle it?

Good morning! The only side effect I had was dizziness. It happened about 2 weeks in, for a couple of weeks, then went away. I have been lowered from 5mg to 2.5mg, because my gradient went down so much in the first 60 days-which is a good thing! I was worried a few weeks ago because my blood pressure got really high-like 190/105! It was a Saturday and I thought I couldn't reach anyone but then I decided to call my cardiologist's office and got his answering service and he called me, so I would recommend that if there is an urgent problem. There is also a 24/7 line for problems through the specialty pharmacy I think. I accidentally drank something with grapefruit peel extract in it, so called and the answering service put me through to a pharmacist. I hope you feel great and don't need to call anyone! 🙂

Super good information @jaymaysea!
Thank you for sharing that with others...you never know who you could have helped 🙂
Today is a brand new day, and it is a blessing to be here, I hope you have something fun planned that brings you joy, so you can focus on that and get a little break from the stress of HCM and Camzyos!

Thank you Debra. I am feeling positive. After I got your note, I immediately sent my cardiologist a note asking what to do if I was having any side effects and what, besides dizziness and fainting, were some of the other things I should watch out for. Just another example of how helpful our Mayo Connect community is. I did not think to do that until you raised it.

FYI for those taking Camzyos. I put a drug interaction app on my phone. The list that BMS provides is extensive. But there are drugs which may have an interaction that are not on the list. For example, I used Astepro for my allergies yesterday thinking it was fine. Then I checked it. Turns out it can have an interaction with Camzyos, albeit it moderate. So Camzyos users I recommend before you take any drug look up whether it could potentially interact with Camzyos.