Patient Intro-Camzyos

Hi @valkyrie28 . What a nice feel-good story to see first thing in the morning! I just passed 2 years on Camzyos and my experience was very similar. Except for the previously-active part - I've always been the poster-child for lazy. But I reached the point where I couldn't go for a light stroll of climb a flight of stairs,... Less than 2 weeks of Camzyos turned that around completely. I'm so glad that I actually CAN go hiking or biking that I now feel more motivated to get out there and do it. Unlike you though, I've been gaining weight. Pre-Camzyos, I felt rotten after eating, and I found myself eating less and less, and had dropped about 30 pounds. Now I'm back to a love affair with food and have gained about half of that back. Still WAAAY better this way though!

I am so happy for you and thanks for posting. Have you had any side effects? Did you start with a dose and maintain it or did they have to trial and error it for a while? How often do you need to get echoes?

Hello and Welcome to Mayo Clinic Connect @valkyrie28,
Thank you for sharing your super positive, life-changing, reverse-aging story with us!
How wonderful to have seen such great results using Camzyos.
It sounds like so far you are doing well and feeling great with the treatment of your HOCM.
Have you been able to hike/mountain bike and garden without symptoms?
You mention your brother has this too, have others in your family done genetic testing for this condition?

@karukgirl
Yes, I am a hiking fool. Planning some backpacks. And no fam hasn’t done any genetic testing, but it’s clear that my parents passed on the less stellar of genetics to their children. My Dad passed at 90 and my Mom is 90.5 and going strong. My bro and myself also got handed Hemochromotosis which is a metabolic disorder affecting iron retention. Phlebotomy and diet are the best management tools for that condition, silver lining it also imparts strong bones. I have been told I have the bones of a 40 yo. My personal goal is to go full tilt until I physically can’t anymore. The couch is my enemy!

@hopenr I was started on 5mg, which was then upgraded to 10mg. I did have some syncope but much less than before the medication protocol. I rarely experience that anymore. As per the recommendations set forth by Bristol Meyers Squibb, I did undergo Cardiac Echos every month for 6 months, after which as I stabilized, they are now relegated to every 6 months. The wall thickening has been reduced to normal levels.

@hopenr Zero side effects. Echos every month for 6 months and they made an adjustment from 5-10mg dosage which got me to their target zone. Echos now need to be done only every 6 months.

@boatsforlife So glad you’re doing well! I started on a path to wellness a few years ago in response to high cholesterol and research which provided a window into the negative aspects of overconsumption of processed foods and the American statistics regarding obesity( almost 50% at this time). I love to cook and eat, but I minimize portions and eat a lot of fresh fruits and veggies cutting out bread, cookies, crackers, chips that are so addictive. Fruit, yogurt, oatmeal. eggs, salads, and minimal animal protein are my mainstays. I love brown rice and farro I studiously avoid anything white. I am an avowed caffienaholic with numerous espressos and dark chocolate. Haven’t touched alcohol in almost 2years. I try and do something physical everyday, the internet is full of free and easy workouts without the cost of a gym membership. In the final analysis, when you take the time to look around, you rarely see old fat people. They don’t make it. This is not my attempt to fat shame, but rather to galvanize people to make lifestyle changes which will benefit not only their quality of life, but their longevity as well. Diets don’t work. Eating healthy and keeping moving is a lifestyle. I wish you well on your path.

@valkyrie28 Thank you!! I am really happy for you.