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.

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.

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.

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.

I had a biopsy of my heart conducted. This test provides direct evidence of the amylod fibril depositons in the heart. I was diagnosed when I was 67 and have been on Attruby since. I showed other tell tale signs of ATTR probably 10 years prior to the the confirmation of the disease ( Carpal Tunnel Syndrome and a damaged bicep tendon). Being on Attruby has stabilized the progression of the misfolding proteins however as mentioned, what damage has been done, has been done.

Recently, there has been some news about studies of long term use with Attruby (in this particular report), giving the heart time to reheal itself. As research continues for the development of medications to specifially target the reversal of the fibril deposits throughout the body, this report sitll is great news.

https://amyloidosisnewstoday.com/news/data-sugg...

Data suggest ATTR-CM therapy may help reverse heart damage

https://amyloidosisnewstoday.com/news/data-suggest-attr-cm-therapy-may-help-reverse-heart-damage/