Quote:
Originally Posted by Grammie 2 3
I thought that pml is more prevalent in those on it more than 2 yrs-even tho most in Europe-and since I am one of those "trail blazers"  I would see if I could handle getting a couple fewer by going a bit longer. If I had been without energy/stamina like I had been 18mths/2yrs I would still get it every 28 days. I am the one whose neuro wants ALL his Ty patients to go every 56 days 
There is a poster on another site  who goes by myoak; his wife has had 70+ infusions interrupted by FDA pulling it . She's doing GREAT 
Boy do I wish I could've been in the trial for Ty-I know I would've had less disability. Oh well... |
There's another poster who pops up every now and then on different forums who was in the original trials who has also had 70+ infusions, She reports no problems at all, with recovery of some major disabilities. I can't recall her name/screen name but it is heartening to read her posts.
We owe so much to the folks who did the trials for ALL the DMDs, because we wouldn't have them if people didn't volunteer. It's a big risk to be in a trial and I wish we could recognize them all and thank them for their contribution.
If anyone who reads this has volunteered for trials, THANK YOU!
