All of this, of course, is entirely dependent on patient reports. I'm on Attruby, similar to Vyndamax, both of which allegedly slow or almost cease the deposition of misfolded transthyretin proteins into the heart muscle walls, in the case of cardiac amyloidosis. But it seems to me that unless a highly specific cardiac scan is done at least a year or more after the original scan that proved diagnosis, there may be no quantitative way to state that deposition has ceased. As my practitioners repeatedly said, "Don't expect to get better, but do expect to not get worse". The damage is done and short of a miracle drug to go into my left ventricle wall and dissolve the protein, the damage stays as is.

Prayers, faith and hope for everyone with this disease.

My husband was put on Avuttra injection last year after his diagnosis of wild ATTR and eliquis I agree another scan should be done to see if it has decreased or stopped the deposition of the amyloid. He was 82 when he was diagnosed and seems to be stable but as you said the damage to both of his ventricles is there. This disease has lowered his immune system and with being on the eliquis has had some bleeding issues needing cautery. We all just have to hang in there.

Susan
Starting Vyndamax slows the progression and it looks like AI provided a good response. As soon as I was diagnosed my cardiologist started me on Vyndamax. My condition also resulted in starting Eliquis.

I have wtATTR-CM...I am 22 months out on Attruby..my cardiac dysfunction has been halted by this wondrous amyloid stabilizer...no shortness of breath or fatigue/weakness and I am active again..I can even enjoy the pool as I am no longer heat/sun intolerant...BUT, my joints are a complete mess..both of my knees are end stage OA, I have 5 trigger fingers, and the spinal stenosis causes further dysfunction in my lower half...I am having hip replacement surgery in about 7 weeks...it is a testament to how effectively the Attruby has worked on restoring my cardiac function...the docs say it is exceedingly rare for an ATTR-CM patient to be healthy enough to get approval for joint replacement....in my case the amyloid deposition into my joints combined with my Osteoarthritis to rapidly devastate many of my vital joints...I keep reminding myself that my joints can't kill me and the Attruby is guarding my vital cardiac function.