Anyone have slow results on Camzyos?

I had alcohol septal ablation, I'm not on Camzyos. Alcohol septal ablation surgery was uncomfortable but no doubt it was worth it. However I now have stiff heart syndrome.

@jachrist thank you! I had not heard of stiff heart syndrome but just looked it up. They didn’t mention that as a possible issue yet. Do you need a pace maker or now have different treatment? That’s the hard part deciding what to do. There are no minor possible side effects to any of this 🤦‍♀️. All life changing side effects.

I have HOCM and had the alcohol septal ablation. I then had an ICD (defibrillator/pacemaker) put in. I have had 2 incidents of sudden cardiac arrest. Then I was diagnosed with cardiac amyloidosis (stiff heart syndrome) to which there is no medication or surgery to repair this. Now my heart does not pump adequate blood supply to my brain so I'm experiencing Ischemic strokes. Now I have complete heart blockage so my pacemaker is working 100 percent of the time.
Jim

@jachrist sorry you have to go through all of that! I appreciate the information because it’s helpful as I’m weighing options/risks.

Best to You
If you have any questions or concerns just ask

I've been on camzyos since January- after 6 weeks I felt like a new person - so much energy. Then gradually over the next 4 weeks that all changed and I was back to extreme fatigue daily and shortness of breath. Kept on the 5mg dose another month with no change. Doc increased dose to 10mg. No change. I was so depressed.
My last echo showed that I was dehydrated - doc has me taking Instant IV electrolyte drink and the fatigue is pretty much gone. I still have a day or two where I need a nap but that's usually when I've been out doing errands, doctors apps or to lunch with friends.
If your doc does recommend this BEWARE ....dilute the powder or you'll get very loose bowels! Also you will pee more ofter but that's not as bad as pooping all day!
I hope this helps it's an easy fix - I always drink lots of water daily so was surprised I was dehydrated. It helped within 2 days.
Good luck!

@sassyrdh329 thank you! I will try that. I’m pretty down about no change now but still hopeful. I do drink water but struggle with hydration so that is helpful.

@jhark
For hydration try crystal light. Mix the small packs in water.
A Dr suggested this to me and I use it all the time.

Hello! 62 y.o. male here. I had a very similar start on Camzyos. Started feeling better on day 2, and all of my symptoms (how I felt) completely disapeared in just 12 days. A couple months later my cardiologist upped my dose from 5mg to 10mg based on the hard data he was getting from the echos. I didn't notice any change but the new numbers made him happy, and everything has been stable for a couple years now. A month and a half seems like a long time while you are in the middle of it, but overall, it's pretty short. Give your body time to adjust, and be patient - your cardiologist may need to fool with your dosage some more. No matter how it turns out, even if you eventually need surgery or ablation, or a change to aficamten - it will be worth it in the long run. And give yourself grace - try not to let the uncertainty cause you stress, and focus on the good - you actually ARE "feeling a ton better," right? Best wishes for peace, calm and health whatever paths you end up on.

@boatsforlife thank you for this! I feel sooo much better. I can do stairs & walks. Things that seem simple that really were a project last summer. I needed to hear this. You are absolutely right. I appreciate the much needed pep talk 🙂