My husband who was diagnosed about a year ago, but who has had symptoms of CATTR for +12years has severe balance issues. Originally they were blamed on vestibular neuritis, but seem to worsen ever more frequently with "bouts" of imbalance and falls. Sometimes there is LOC, other times he is just soooo tired that he falls down. Drs seem to just shake their heads and seem to imply it is a separate issue
Has anyone else ever had inner ear nerve damage attributed to the amyloidosis?

I have be taking Tafamidis since March 2022 with no positive changes. I was thinking that due to my advanced heart failure I may not see any benefit by continuing to take Tafamidis.

I am experiencing daily bouts of nausea, vomiting, diarrhea and extreme drops in blood pressure. For the past 2 months now. I am currently in CHR and have been done with chemo for one month. Didn’t have any of these issues while on treatments. Any thoughts or similar issues out there? I’m just wondering if it’s the Amyloidosis or a result of nerve damage from the chemo? I’ve had bacterial and parasite tests done but no evidence of either. Also had a recent echocardiogram which was normal. No-one… read more

I think the only way to really understand how much Tafamidis works is by comparing the heath thickness before and after, at least 1 year of therapy. Has anyone got this information?

My doctor cautioned me against lifting heavy weights. He feels this would further harden my already hardened and enlarged heart. He suggests very easy weights but with more repetitions which would make this more of an aerobic exercise. Does anyone in the community have any weight exercise experience they may wish to share?

I have HATTR Amyloid resulting in my having Cardiac Amyloidosis and Peripheral Neuropathy. I am taking Vyndamax and soon to start Amvuttra (spelling) could these be the cause of my weight loss.

ATTR CM, three years diagnosed and still hungry. Roy2