Hi all, Tues I had my 37th Tysabri infusion This time and in the future I went an extra 5 days. I have noticed I haven't been jonesing for it like I used to and thought it would be right for me to try this as I will get 2 less a year (if I go 7 days I will get 3 less). I did fine but did notice that I did get "juiced" after the infusion-so I had been running down a bit. That evening I did dishes, baked a banana nut bread (from scratch), more dishes and rode my indoor bike. I do most of this daily but not in such a short time frame; so it did point out to me that I do lose some of what Ty has done for me but not enough to keep me at every 4 weeks, at least for now.
Next month will be 3 YEARS for me on Tysabri and what a blessing it has been !!!
Linda

You absolute trailblazer, you!
Tell us what made you decide to try a reduced schedule. Did your neuro suggest it?

I actually thought of doing a more frequent schedule right after I started, but the neuro wouldn't go for it. My thinking was that due to my larger size and height, that I needed more. Now I am of the mind that I am sticking with the 28 day schedule, cause I already had a month off for the ruptured appendix.

Glad to hear that it helped you up from the "running out of juice" feeling!

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!

Riverwild, I couldn't have said it better!!! Yes, a very BIG Thank You to all who did and are doing trials
Linda

God Bless you! your my hero!

You're my hero, too! It's so heartening to hear about successes..