Anyone take new drug Camzyos (mavacamten) for HCM?

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?

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! 🙂

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 🙂!

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

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

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.

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?

That must be a weird feeling being lightheaded. I'm glad you feel good today...and look at you! Walking a couple of miles? That's great! Thanks for sharing your symptoms, like I said before, you never know who you may be helping by sharing your journey @jaymaysea! Day 8 already...wow time just flies! @kelliw noted her worst dizziness at around two weeks I think, so keep a sharp eye on yourself!

Will do!

I am newly diagnosed as of this week. Had a cardiac cath which showed good heart vessels, but confirmed my cardiologists suspicion based on echo and physical symptoms, of HCM. I read about the new med, but also saw the price-approx 8,300/mo (with no insurance). I am being referred to another cardiologist to discuss this med, but haven’t heard from them yet. My questions really revolve around affordability with Medicare Part D. Has anyone NOT been able access the med due to cost restrictions? And, if so, then what were their providers suggestions if any?