HOCM & VFib amiodarone, sotalol,camzyos

Posted by meryl59 @meryl59, Jan 28 8:35am

Hi , new to this page. Diagnosed 12 years ago with HOCM. At 52 had pacemaker/decib placed. 12 years never fired till this last October. So scary. 5 days in hospital . Had to get Amiodarone drip and now on 200 mg , docs want to switch me to Soto lol,because at 64 the Ami is too toxic. Anyone on either drug? How’s it going?
Next is the camzyos ( mavacampten) reading up on it but a little nervous . Currently I’m not driving (3 months ) no gym . Short of breath walking around the block. No swimming. Just laying low and starting to lose my mind. Any info greatly appreciated! A lot of people seem to still have the symptoms after camzyos vs before ???

Interested in more discussions like this? Go to the Hypertrophic Cardiomyopathy (HCM) Support Group.

katiekins | @katiekins | Feb 13 4:36pm

In reply to @meryl59 "Hi curious how you know it’s non genetic ? Are you in a REMS study and..." + (show)

I had all the thorough tests and all the echos booked monthly, extensive blood tests etc....they are very careful but its not for me.

jess51 | @jess51 | Feb 13 7:14pm

In reply to @katiekins "I had all the thorough tests and all the echos booked monthly, extensive blood tests etc....they..." + (show)

In reviewing your initial question, o see that you did ask about other medications. I was first diagnosed because of repeated afib incidents requiring cardioversion. I'm also on blood thinners and a beta blocker. I also have an ostomy having had my colon removed. The lead up to that was sudden and dramatic. Personally I always wondered if there was a bacterial contamination from my gut to my heart. But I'm a good patient and try not to impose odd speculation on my excellent cardiologist!