Anyone take new drug Camzyos (mavacamten) for HCM?

I see my cardiologist every 4 weeks. She is seeing improvement. She prescribed a move to 10 mg camzyos as I had more potential for improvement. Just started that so we will see. So grateful for the improvements.

@marilynsaint Sometimes there are options from the drug manufacturers for people who cannot afford the medication, so I would suggest looking up the drug and going to their website to see if you can apply for assistance. Often Medicare part D plans and Medicare "advantage" plans have formulary lists of lower cost approved drugs, and you certainly can contact your plan and ask. With part D when you sign up, there should have been an online search to see if your meds would be covered. I went on traditional Medicare this year and a part D plan. We picked a cheaper one that hardly covers anything because we don't need much for prescriptions as we are fairly healthy so why pay for something we won't really need. That can always be changed at the annual enrollment period. Sometimes doctors can point you to a manufacturer sponsored discount program. There may also be cheaper medication that can be used instead which should be discussed at the next appointment. This sounds out of reach for most patients if they have no coverage from insurance.

Hello @marilynsaint, and welcome the Hypertrophic Cardiomyopathy support group. You are in the right place to find out information from other folks just like you. I am glad you were diagnosed and did not go misdiagnosed or undiagnosed and wonder what was wrong with you. It's especially good news that your coronary vessels are good!
I am not an expert in Medicare A, Medicare B or C or D. But I can say that $8300/month is a LOT! While we wait for other members who may have more knowledge about Medicare D to chime in, I think that Medicare A is for hospital inpt visits and is free. Medicare B is a supplement that fills in the gap between what Medicare does not cover and is either a GAP plan or a Medicare Advantage plan. Some Advantage plans have the Drug plan inside the coverage, some do not. And then there is the D plan which is separate and in addition to a GAP plan. Advantage and GAP plans are very different. Do you know which you have? Do you have access to your prescription drug plan or can you reach out to a local Medicare advisor in your area?

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?

Will do!

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!

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