I have hereditary ATTR CM Amyloidosis that has not yet manifested. At least that is what the doctors say. I have none of the typical heart or nerve problems. My scintigraphy showed no Amyloid as of last October. What I do have are the so called, Red Flag Symptoms. I had Carpal Tunnel in the past but it has somehow disappeared in the last couple of years. What I do have is problems with my tendons. My supraspinatus tendon, part of the rotary cuff, has a tear. My Biceps tendon had a tear and I feel it has another tear. I had surgery in April 2025 and am still in a lot of pain! It was better but has gotten worse again. Worse than before surgery.
I am in the ActEarly study with Acoramidis/Attruby here in Germany. Of course I don’t know if I get the medication or a placebo.
Is there anyone in the is group with my type of Amyloidosis with problems with tendons? Or anyone in the ActEarly Study?