Camzyos thoughts? Good or bad
Camzyos has been offered as a treatment for my HCM. Those that have tried or are taking this medication, what are you thoughts? Can you tell a difference or any side effects you notice?
Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.
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Good morning @muddymudskipper. I've posted about my Camzyos experience frequently in various threads on this forum. Instead of boring the heck out of everyone who has already seen them, I'll let you seach them (or not) and just summarize by saying that I've been on Camzyos for over 2 years now and have had zero negative side effects except for a minor bump in blood pressure. All of my debilitating symptoms were gone less than 2 weeks after I started Camzyos, and it feels like I have no oHCM anymore. Not everyone has such great results, but my experience was 100% positive. Good luck whatever path you take.
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5 ReactionsWelcome to Mayo Clinic Connect @muddymudskipper,
@boatsforlife is a wonderful resource for you to check out. Click on his name and you will be taken to all his wise and insightful posts.
Along with @boatsforlife's posts, have you had a chance to check out the Camzyos groups posts?
Here is the link to that information (started in 2022):
https://connect.mayoclinic.org/discussion/camzyos-mavacamten-prescription/
And here is another link to the Mayo Clinic's HCM information, so you can learn as much as you can and be your own best advocate:
https://www.mayoclinic.org/diseases-conditions/hypertrophic-cardiomyopathy/symptoms-causes/syc-20350198
Is your cardiologist educated in the treatment of HCM/HOCM?
When is your next visit?
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3 ReactionsThank you both for your insight into your experiences. I will definitely be reading up on @boatsforlife page. We are slated to return to MN in a few weeks time.
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1 ReactionGreetings Muddy, I have been on Camzyos now for a little over 3 years and at the beginning I felt like my old self again. Energized and ready to take on the world. I now have an ICD that’s giving me a few hurdles but I would saw try Camzyos and if it causes you any problems contact your doctor immediately. Hope this helps! 🙂
Good morning...started taking 5 mg Camzyos in the mornings in Oct 2025. Felt great the first two weeks except dizzy at times. Doc switched med to bed time. Dizziness gone literally over night. My first echo 30 days after starting showed great improvement in the gradient so med was reduced to 2.5 mg. Other side effects; diarrhea, no appetite (lost ten pounds)...the months of Oct- January were difficult...Trying to get ready for holidays, work schedule, out-of-town family events, etc. and no energy. I slept generally well except for bizarre dreams. I found that for me good sleep didn't relieve the fatigue; I woke up as tired as when I went to bed. However, I found that on days that I was not at work I would have a cup of tea and take a nap from 2-3:30. I felt groggy upon wakening but could continue house chores, errands, do laundry, etc. and it gave me energy for the next day. Good news...as I began the month of February I started to feel somewhat "normal"...I have found that I better get my goals for the day done in early morning by around two because I feel like my "tank" is starting to dwindle. When I am home I fix a full dinner for my family at lunch and then we have sandwiches/salad or soup for dinner...no energy to fix a full dinner. My appetite is still finicky but my digestive system and weight have stabilized. I find it discouraging to anticipate living each day with a dwindling tank but I have learned not to fight that reality. I needed to face it and prioritize my "to do" list to morning and realize the afternoons/evenings are way less productive. I feel like it's half of a life each day compared to my usual work ethic and productivity but I need to adjust my expectations. I am grateful for the advancements in science that brought this medication to all of us, for the relief of my symptoms, for great echo results, for the energy that I do have and for life in general...I am so very blessed. Hope this helps...we all respond differently to meds and treatments. I was so scared to take Camzyos but I would certainly do it all over again...Best wishes to you!