Anyone take new drug Camzyos (mavacamten) for HCM?

Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

Hi @andyherman3, thanks for asking.
100% yes the surgery worked for me. I take only a low dose aspirin each day and that is it. I was barely able to walk on flat ground, let alone a gentle incline or steep hill. I felt like I had lost any joy left in my life. I was so active physically, and now I couldn't bend over to tie my shoes without gasping for air and having tachycardia. My heart was starting to fail, and I was not able to join the Camzyos trial. I was offered disopyramide as a last ditch effort, after at least 4 beta blockers and calcium channel blockers did not work. I ended up at Mayo Clinic in Rochester, and had the prescription at home ready to try, but I wanted another opinion. Mayo said open heart surgery. Naturally, I was freaked out! It's a BIG surgery. And has risks! But every procedure has risks as do drugs...so knowing I was in the best hospital in the whole word, I put my faith in God and the Mayo. Looking back, it's been three years now, I just can't imagine not having had this done. I'm so much better. I'm able to hike again. Not like I used to, but I'm also three years older! I had the surgery when I was 62. I had middle back pain that was a bear to live with for a year, and other then that, I have a pretty scar to remind me how brave I was and how I overcame my tremendous fear to proceed with the surgery. You're the only one who can decide this...you know that, but I can say being in great shape before surgery was very helpful. I think if I had kept postponing it, and sitting on the fence, I would have further declined and my health would not have been so good. Make sense?

Did the heart surgery improve/ remove your symptoms? How long ago was it and are the results long lasting? I was told this is the next step if Camzyos doesn’t work. Would love your feedback on this and if you felt the risk was worth the benefit? Thanks so much.

Hello @lakehappy, and a warm welcome to Mayo Connect! I was a stalker on here too when I first joined, so I am happy you feel comfortable enough to jump in! You have come to the right place to find information about Camzyos. There are some incredible members here that have shared their journey with all of us, and I hope as you begin Camzyos this coming Tuesday, you will feel free to ask them your questions. @kelliw and @jaymaysea are Camzyos champions and have shared their ups and downs honestly and openly with the group.
There is a strong genetic link, have you read this? It's very informative...
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
HOCM/HCM is so difficult to diagnose because the symptoms mimic so many other heart conditions. Starting on Camzyos I would expect you to be apprehensive, it's an experimental drug, but there has been a lot of success, and also some failures. I think you are very brave to try it! I had open heart surgery at Mayo Rochester, so I didn't get an opportunity to try Camzyos, but I can tell you the Camzyos group is a wealth of information. Have you had a chance to read some of the stories here in the Camzyos group?

Thanks for your reply !
I was diagnosed in July (by echo)...pretty quickly after reporting minor symptoms to my primary care Dr.
Met with the Lahey team in Sept ... GREAT team !!
Now here I am Nov 1 ! As far as diagnosis and getting a plan together, not bad. Of course, surgery was suggested as the other option, but I chose to give Camzyos a chance first !

Welcome @williampconley! I am so glad you are here and shared your Camzyos story with the group. You must feel pretty happy about those results from your echo. There a so many great members on here who share your same story, and they have been so helpful to one another in the ups and downs of Camzyos. I hope you do well on the lowered dose, and thankfully you have another echo coming up in three weeks. When were you diagnosed with HOCM?

I've been on Camzyos for 30 days.
I have HoCM , septum = 16-17mm.
No miraculous symptoms reduction to report, but my symptoms are on the mild side.
Chest discomfort and light headedness when going up hills or stairs.
General chest discomfort, sometimes while doing nothing.
But ...had my first (post med) echo last Friday and my Gradient went from 35/50mmHg (rest, Valsalva) to 13/17 !!
Based on the algo, I just went from 5mg to 2.5mg.
Next echo 11/22 ...

Thank you so much for your comments. Where did you order the CYP test from as the results would be very interesting? My gradient dropped from over 100 to 19 after one month on 5mg of mavacamten. I was decreased to 2.5mg and have sustained my low gradient at 17 after month 2. I have had “known” HCM for over 10 years and had been relatively asymptomatic on metoprolol (with a gradient of 30). However, this year (a few months after I acquired Covid) my gradient and symptoms (SOB and fatigue which is new) increased significantly. Now I wonder if I have long covid instead since my gradient is so low and I’m still symptomatic?? I will stay the course for a few more months and hope more improvement is to come. I agree, we have to be our own advocate and so much more research is needed for HCM.

Thanks for sharing your symptoms, and asking the question.

I have had the opposite experience to you - my symptoms improved within a few days, and continued to improve after several months on mavacamten. I no longer need to nap during the day, and can walk without angina, and go up the stairs in my three storey house. I had to advocate to go on a higher dose, and am now on the highest dose of 15mg. But my gradient did not budge and my doctor said she was "disappointed." Gradient was very high at 150, then 139, and 6 weeks ago 117. She said this was irrelevant and that the drug is not working. But clinically I have way more energy than I used to have. I recently ordered a CYP test for drug metabolism. It includes mavacamten, and I learned that in Europe and Asia, this test is done before deciding dosage. It is not done in North America. You can purchase it privately for about $600.

My experience is that I have to be my own advocate, do the research, and seek other professional opinions. It is uncomfortable to hear different opinions from different doctors, and to be on the cusp of a paradigm shift in the treatment of HOCM. One of the other shifts happening is understanding the role of the gradient. I don't know enough about it, but have been told that there is debate. Sigh.

Good luck to all of us!