HOCM & 8th month on Camzyos...how long will Camzyos work?

Can someone take Camzyos for many years or even for life?

Yes — many people with obstructive HCM can stay on Camzyos long-term, and current evidence shows it can be used for years, safely, as long as the required monitoring is followed.
But whether it ends up being “for life” depends on the person’s heart and how they respond.

Here's what is known:

Camzyos (mavacamten) has 3+ years of follow-up data from extension studies, and results show:

It continues to reduce obstruction.

It improves symptoms, exercise capacity, and quality of life.

Its effects remain stable over time for most people.

Some patients stay on it continuously.

Others pause or stop if:

Their left ventricular ejection fraction (LVEF) drops too low.

Their obstruction improves so much that symptoms become minimal.

They need another therapy (like myectomy, alcohol septal ablation, or another medication).

Is it intended as a lifelong therapy?

Camzyos is potentially a long-term or lifelong medication, if:

It keeps working well.

The heart stays safe on it.

The patient still needs obstruction control.

But it’s not automatic that every patient will stay on it forever.

Key point: Monitoring is essential.

Because Camzyos affects heart muscle contractility, patients must get:

Regular echocardiograms (monthly at first, then every 3–6 months)

Dose adjustments based on ejection fraction and LVOT gradient

This is what makes long-term use safe.

Bottom line

✔ Yes, Camzyos can be taken for many years.
✔ Some will stay on it indefinitely.
✔ Others may reduce, pause, or discontinue depending on heart changes.
✔ Long-term safety looks good so far with proper monitoring.

The above information is from an authentic study on Camzyos.

I just got off Camzyos 4 weeks ago with being on it for 1 year and 8 months. It great in reducing my HOCM symptoms and allowed me to walk with more exertion. I still though had ongoing symptoms with activity. At 54 I have decided to go through Septal Myectomy surgery at Mayo to get closer to a normal state. After 3 weeks of stopping Camzyos my obstruction came back STRONG with breathing and chest pain while walking and more so when exerting. My cardiologist maxed my Bystolic to help, which it has but I still have symptoms both not the strong chest pain of earlier.

So Camzyos worked but I was concerned with staying on it long-term and the ongoing need for medication monitoring and adjustments. Considering surgery is a big step but feel getting it done at my age will be worth it. Good luck and hope everything goes well.

@mbharris thank you for sharing. Good luck with your surgery. Those are big decisions and you are brave 💐

Almost 3.5 years now on Camzyos for this 76 year old male who is generally healthy. Straight A's so far, and now on only every 6 month schedule for cardiologist and echo visit. You can see my posts over time on this web site.
Very thankful! God bless!
Captainterry

@mbharris Best wishes on your upcoming surgery, you will be in good, I mean great, hands! I was never on Camzyos, had a septal myectomy at Mayo at almost 76 when my symptoms suddenly became worse. My cardiologist, from his medical literature readings and the rest of us sharing here on Connect, have learned that Camzyos helps many but not everyone. My cardiologist also said that a certain percentage (don't know the %) eventually need a septal myectomy anyway. YES! Getting it done will be very worth it!

@mbharris I am just in the process is getting on camzyos and in my case, gradient 214, I wish they would let me just have surgery for repair and move on.

@walkinggirl thanks and appreciate the support. I can’t wait to get this done.

@mbharris I am sorry to hear that you were not able to continue on with Camzyos. I agree with what @walkinggirl shared.
I know that many can take it for extended periods, and some just cannot. We are all unique and different in how we react to the same medication or treatment. No two of us are alike.

There are several members on here who have your same experience.
Member @brumasterj recently had open heart/septal myectomy at the Mayo Clinic in Rochester. He also was super active, in his 50's and on Camzyos, but it did not work. If you have not read his story, spend some time reading his posts.
Another young member @dbrima, was unable to tolerate Camzyos, and had a septal myectomy at a local hospital. The surgery was not successful and she ended up having to have another septal myectomy at the Mayo months later. Where and who does your surgery is a huge part of this story.
These are not to scare you! These are to inspire you and support your decision to move forward with open heart surgery.
It's scary.
For real!
But just making that decision shows you have courage and strength you didn't even think you had. Your age, 54, is a good thing. You're a youngster! I was 62 when I had mine, and before HOCM took away almost everything I loved to do...I was super athletic.
After my septal myectomy I was able to gain back most everything. Not all. But a lot for which I am so grateful.
When is your surgery planned?

@mbharris when is your surgery date? I will be back up in Rochester having sternal wires removed because of sternal pain! Please Dont let this scare you you are making the right choice! 2 days after my surgery i was so sick from the medications i asked Dr Derani if i made the right choice with getting surgery and he said yes you did!
He was right i feel so much better hills and stairs ladders are no longer an issue:)
Best of luck with healing and as much as your gonna want to push the envelope as yku start feeling better stay with the strict instructions!
I really think i would have benifitted with physical therapy after my surgery only because of how active i am! So consider physical therapy
Again best of luck

@brumasterj Glad to hear the surgery helped and hope he can help you with the sternum. Surgery date Dec 10. I watched a video yesterday with Dr. Dearani, who will be my surgeon, and he comes across like he truly knows his stuff! Hills, stairs, and now being off Camzyos for a weeks has flat surfaces behind an issue. I’m so ready to back to normal.

Question for you. How was sleeping post surgery when you got home? I’m a side sleeper and concerned that I will be struggling to get a good night sleep. Can I lay on my side? It looks like will need to elevate for a few weeks is that true.

Another question, how much walking/exercise have you been doing at home. Should I look to push myself to build up my endurance? Trying to understand what I should focus on?

Appreciate all your insight and hope things go well for you.