Anyone take new drug Camzyos (mavacamten) for HCM?

Thanks - I am fortunate that I actually feel just fine - just shortness of breath 3 - 4 miles away. I hear you about being a 3 hour drive and not near "civilazation" - I have lived in several similar places in my life. Good luck resolving this!

that was meant to say 3 - 4 times per day!

Hi - my doctor just suggested we try verapamil and if not tolerated then go on to Camzyos. Two questions - how well do you tolerate the verapamil? Side effect? Also, I think that verapamil treats only symptoms while Camzyos does do some reduction of the obstruction - perhaps permanentely? Is that your understanding?

Hello there, yes had verapamil for many years and still in 40mgs am and on. After my mini mitral replacement with a small mini myectomy (no scars) but very painful and a long recovery and am in week 14 this coming Monday. Minimally invasive often means more pain as they have to cut under right rib to gain access and under right rib. Verapamil slight constipation and little fluid around the ankles. Camzyos a completely different drug (as you say verapamil treats the symptoms) it apparently stops the hyper activity of the heart therefore thickening and gradient comes down but does have a black box warning. I took it for a week but it just didn’t suit me sadly. That’s my way of describing it, do hope this helps. Good luck. What age are you ish?

Thanks so much. I am 73 and new to all of this although it appears that I have had HOCM all my life! It sounds like the verapamil helped you for a long time and that you tolerated it well - anything else I should know about it? Also, when you say that the Camzyos didn't suit you - can you tell me a bit more about what you mean? Thank you again.

Yes likewise, 74 and apparently had HOCM a long time and ur came to light in the gym aged 57 (as I overdid it) and then symptoms began but with meds was fine. I only did this operation (for mitral valve regurgitation) upon advice of surgeon. Hated everything about it at the beginning but tomorrow week 14, am beginning to feel alot stronger. Who knows…. Camzyos is a wonder drug for some but my real problem was the mitral valve hence the operation. Camzyos comes with a warning and may not suit everyone (not trying to put you off but felt amazing for the first week but then headaches started, jaw ache and blurred vision just was not for me. Di you have symptoms? Are you in meds? It’s scary in the beginning but don’t be. Do you know what your gradient is?
Kate

Hi Kate - our conversation is really helpful. The only symptoms that I have are breathlessness and occasional fatigue that come on suddenly after I have been running around all day. I am glad that you are feeling a lot better. Have you been on calcium channel blockers and what was that like? side effects? My doc wants to skip over beta blockers because they are, apparently, correlated with depression which I have had on and off all my life and do not want to fool around with - my meds for that are now perfect. It is good to hear about your experience with Camzyos - scary symptoms but I won't be as alarmed if they happen. The REMS team will be on top of that, I hope. I don't know what me gradient is - will ask doc when I email him later. What gradient is good? bad? range? Thanks so much! Joyce

I have been on Camzyos for about nine months. My prescription dosage was increased from 5 to 10 mg, and I felt excellent. The only thing that has happened since I started taking it is that my blood pressure has gone way up. My cardiologist has prescribed blood pressure medication, and it has helped, but it's still higher than it should be. I am in the process of moving and have scheduled an appt. with a new cardiologist. I am hoping that this issue will be addressed.

Ive been on Camzyos for about 6 months. Started at 2.5, increased to 5 a month later and increased to 10 in last 2 months.
Feel better less breathlessness when walking up hill.
Only side effect I noticed was when increased to 10 I began to experience digestive issues such as looser bowel movements about 3 times a week. Never had this issue before.
Overall this drug has helped me and I will continue to take it as it is showing a more normal gradient.

@boatsforlife Your comment about skipping meals and losing weight because eating made your symptoms worse really struck me. I have Hashimoto's so I've always blamed this on my medication. Could HCM be 'the cause' of that? I see the cardio for this medication this week. I do not have obstructed so I hope I will qualify. My recent echo was very concerning. If you could elaborate on the symptoms you got from eating I'd appreciate it. For me, its dizziness and fatigue get much worse.