Camzyos mg increase

I have to ask are you being seen by a COE? Im dumbfounded that after a year your at 135 gradient! What was your gradients at each echo did they drop significantly and then suddenly go back up?
I started camzyos 5months ago gradient was 122 and it dropped to 38 in first month and maintained 38 thru out
I took my last dosage last week in preparation for septal myectomy in june
Hope everything works out

Hello @tvickery and a warm welcome to Mayo Clinic Connect.
That must be quite puzzling and scary too, that your last two echoes showed an increase in your gradient after being okay previously.
I did not take Camzyos, I had a septal myectomy at the Mayo Clinic in Rochester for my HOCM, but the Camzyos group is a wonderful place to find information about this relatively new drug. Have you had a chance to read these discussions?
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
I may not have taken Camzyos, but I can share with you that being in the care of a cardiologist who is well versed in the treatment of Hypertrophic Cardiomyopathy, obstructed or not, is very important.
It is equally important that you learn as much as you can about your condition and get as much information as you can so you can be your own best advocate.
You are important to you!
That's why it is great that you are here on Connect to try and learn more. I can also offer that there is no shame in seeking second or third opinions. This is your life and you deserve to be part of the decision making. I actually saw three cardiologists from out of town, in addition to my local cardiologist who had misdiagnosed me for several years.

From reading the posts of those who have taken Camzyos, it seems that it is a wonder drug for some, and does not help others. Each person is a unique individual and no two people will have the same results. While we wait for members who may have had to increase their dose from 5 to 10mg to chime in, is your cardiologist knowledgeable about HCM? How long will you be on the increased dose before you see your doctor again?

Hi @tvickery . This is a great question. I'm a 61 y.o. male and have been on Camzyos for just under 2 years. Like everyone else I started at 5mg. I felt like a million bucks at that dosage but after some (10??) months, my cardiologist increased me to 10mg. I have felt very confident with the care I've received since day-1 with this, so I have intentionally NOT asked for the clinical/numerical data. I have NO medical expertise and I am self-aware enough to KNOW that I would simply stress myself out trying to interpret numbers that I don't understand. I observe the subjective side of how I feel, and my wonderful cardiologist observes what the numbers say. Of course I've been lucky that things have been working so well for me - not everyone has that. So why did my dosage increase? Did my number jump after the first few months? Did he just want to nudge things a little further along the path? I truly have no idea. But I would not be at all surprised if, over time, the body responds differently to the same dose. Almost every medication I've ever been on has had to be adjusted - sometimes multiple times. Even something as simple as blood pressure measurements - one day they are high, then low and then high day after that, even while BP meds stay the same. Also, over the years I have seen echo results from one lab being vastly different from results at a different lab. Were your most recent echoes done by a different tech?

By all means seek a second opinion if you are uneasy or if you find you don't have a level of trust in what you are getting from the physician. I had plenty of those over the 16+ years we were try to track down an oHCM diagnosis! As to your question about side effects when going from 5mg to 10mg, I didn't feel anything at all but my BP numbers went up a bit on the 10mg Camzyos, and I had Losarten added to my meds a couple months after the 5mg-10mg bump. I just had an appointment this week at which my cardiologist expressed great satisfaction with my numbers. And I continue to feel (as Tony the Tiger used to say) GRRRREAT! If I were in your shoes, well my feet would probably hurt, but I would be tempted to give the increased dose a chance. If it causes you trouble, it can always be reduced again, but if your gradient is actually too high, it could just be part of the adjustment process. You say the you have been feeling "pretty good" but still tired sometimes." For me, ALL of my tiredness and other symptoms disappeared COMPLETELY and have stayed away. So it might be that the increased dosage will help both the objective numbers and the subjective "how you feel."

But remember, my advice is worth exactly what you paid for it - I'm not a doctor. However you choose to go with this, stay positive! Good luck in your walk with HCM!

I can’t comment on why your gradient might have increased but will share my experience. I’m 76, female and started on 5mg Camzyos 2 years ago. My gradient was 150ish. Within days I felt better - more energy, less angina. But my gradient barely moved. I increased dose to 10mg. Felt even better but after a few months gradient barely decreased. Doctor urged me to have surgery. Instead, I arranged for pharmacogenetic test which showed I was a rapid metabolizer of Camzyos. I asked to have dose increase to 15mg. I had no side effects. Within three months my gradient dropped dramatically. It is now normal. Long may it last! It’s worth exploring how you metabolize Camzyos. I was told this is routinely done in the UK and China before prescribing. Wishing you all the best.

Wow-I never realized we metabolize meds so differently. Explains a lot! Wonder why we don’t have this done routinely in the US?

More than likely since it completed its testing phase and was recently approved so it is high monitored by the FDA!
Good question to talk to your cardiologist about!
@nanakpm was alcohol ablation discussed with you? And if so may we ask why you opted for camzyos?

I was told ablation not as effective as myectomy. And I’m terrified of surgery. My intention was to try Camzyos first and thankfully it worked.

Also routinely done in Slovenia. They did the pharmacogentic test before they started me on Camzyos and it showed it was normal so they went ahead with prescribing it, otherwise they wouldn’t have. I was told this has a major impact in how you respond to the treatment.

Just for the record, my cardiologist refused to help me get pharmacogenetic testing. She just kept pushing myectomy. So I went to my family doctor who referred me to the private company that does it. I have since changed cardiologists. I swim daily, walk daily, and have more energy than I had ten years ago.

I want to thank you all for your comments and observations. I started taking camzyos just 3 weeks ago. I'm 79, have been avid about exercising for years, especially pilates, which I think helps tremendously with my feeling of well being but I've been very frustrated by my inability to walk distances and climbing long flights of stairs is an issue. I'm really hoping camzyos will help but, so far, it's a very subtle change I'm experiencing.
Everyone's comments are very helpful. Hearing of your differing experiences gives me an understanding the range of reactions to taking this drug are possible.