What numbers to expect on Echo after starting Camzyos

It seems to me that the gradient at rest and on Valsalva are what my cardiologist pays attention to. I’ve been told that it should start coming down after 4-5 months or sooner.

I have had a very modest decrease after increasing the dose of Camzyos from 5 to 10mg. Just started 15mg dose and hoping for better gradient response.

Hope all goes well for you!

My doctor was so pleased with my results on my echo after only 4 weeks on Camzyos. My resting gradient was always normal, but the Valsalvar gradient went from 88 on my echo right before I started Camzyos, down to 24 after 4 weeks of meds!!!! We are all so happy. I can walk without having to stop 3-4 times, and have put on over 7000 steps at a car show without a problem. I pray you all can get the same results. Another echo on Dec. 12.

Such hopeful news - I’ve been on CAMZYOS for 5 weeks at 5mg and my cardiologist did my echocardiogram at 4 weeks and was elated at the results. I do feel so much better; able to walk longer distances at a better pace and not breathless either.
My question is whether there is a point at which one can stop taking CAMZYOS?

Hello there @par4rosy, and WELCOME to Mayo Connect!!
I'm so glad you are here and that what you've read gives you hope. It great too that Camzyos is working so well for you in such a short time and that most important, you're feeling so much better. I was not able to go the Camzyos route, but there are so many brave and amazing members here who have, and hopefully they will be able to answer that question, unless you ask your cardiologist first.
No two people are alike, and each case is different as you probably already know...but it doesn't hurt to ask! Again, I'd like you welcome you here and hope that you can find a lot of good information shared by others on this HOCM/Camzyos road 🙂
How long have you known you have HOCM?
How did you hear about this great support community on Mayo Connect?

So good to hear back. A year ago my cardiologist said he wished he could get me on Camzyous but the costs were prohibitive. Once those issues were resolved I started on the medication.
I was researching everything and anything I could find on Camzyous and came across the Mayo Clinic support group. So glad to learn about others experiences with this medication.

I have been taking Camzyos since June of last year. My cardiologist is most concerned with LVOT at Valsalva and the only other number that is noted is the EF but never really mention after my Echo. I was first put on 5 MG of Camzyos and my Valsalva number went for 109 to 18 in less than a month. The FDA won't let patients be below 20 so my dose was cut to 2.5mg and the Valsalva number had stayed at 24 until now. It is back up to 50 so my dose was just changed to 5 mg and my next echo is in two weeks. This entire time (just like colliemom517) I am able to run up and down stairs, walk up inclines, not stop when walking, etc. so I am thrilled with this drug. I was on maintenance, that means you get an echo every three months so some time during the past three months something changed and now I will be back on monthly echos.

Thank you for sharing.

I’ve been on 5mg of camzyos for 6 weeks now (feeling good) and was hoping to make some extended overseas travel plans in March to catch up with family who live 10000 miles away!
But I do see now, that I cannot take anything for granted and my next echocardiogram will determine the dosage and how often I need to repeat the echos.

Hi @par4rosy, it must be frustrating to wait and wonder and try and live your life while on Camzyos! When is your next echo?

You will need an echo at 4 weeks after starting Camzyos, 8 weeks after starting and 12 weeks after starting, then, from what I have read, every 12 weeks after that. I do not believe they will fill your prescription without those echocardiograms being done.

January 31st will be my 8 week echo and February 28th the 12 week.
If I stay on 5mg through the next two echo’s perhaps I get to travel after that.
Deeply great full for the benefits of Camzyous as I feel so so much better .