I need every bit of advice I can get. I have a top amyloidosis doctor at Columbia University Hospital in NYC who i have great faith in but still hard to do anything without being out of breathe. He is waiting 6 months to see how the Vyndamax works but in the mean time, I fear I'm not getting better. Just going about my life as best I can and sitting down every so often to catch my breathe. Legs seem to be weaker but I'm going to try to exercise my legs more.
Not the way I was expecting to live in my 80's but lucky to be alive.
How are you doing?

Lets keep in contact

Many thanks.

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