Since Vyndamax is the only drug I know of to treat amyloidosis, I have been taking it for 7 months. My doctor in NY worked on this drug by Phizer and know a lot about it. Vyndamax doesn't cure the disease but is supposed to
slow it down. I go to the doctor this week and will let you know if it slowed the disease down. I do know there are a lot of people working on finding a cure now that they have found that many more people have amyloidosis than they thought. I too have the Wild Type ATTR. Let's hope some new advance comes up soon. All the best, Susan

Am responding to Bruce. Sorry that you think you are declining using Vyndamax. I've been on it for one and a half years and think it has stalled my decline. I have my six month appointment with a top notch amyloid doctor at Columbia University Hospital in NY on first of March. I'll fill you in with what info I get from him. Hope he sees some progress. I, to, fade late afternoon and have to sit down for awhile. Also my voice has been effected . Agree, those shopping carts are helpful. I just had a triple lumbar fusion operation two years ago and the shopping carts were a miracle. Keep in touch and take good care of yourself.

it is important to exercise the legs because circulation is insufficient, more blood going to the legs than coming back. How to do that with the fatigue issue? I got an under the desk bike exerciser from Sunny. After one session I experienced warm feet that the night before were chilly cold. Wife is my witness. Grateful through it all as an 80 year old. That in itself is enough to be grateful for. BK

My decline is only slight. I believe the Pfizer med is working. My fatigue combines with two discs rubbing bone on bone, a devastating combination. At rest I have peace and enough energy to socialize. I find a walking staff very helpful... allows me to get around when I could not do it otherwise... I would fall or pass out. Persevere and stay strong all ! Chris3 please get on some meds. Mayo and Cleveland Clinic have experience.

I am not on any drugs ( as yet).