Hi Karen,

Welcome to the community

I've been on Ty for 2 years. I was forced to take a holiday because I was too ill from other things: colds, shingles, etc to have an infusion for 3 1/2 months. When I restarted my infusions I found that after 3 weeks I needed my Ty fix!!!!!!!!!! But, that only lasted a few months and it has never been a problem for me before or after that period of time.

Good luck!!!!!!!!!!!!!

Welcome Karen!

I also found that for the first year or so that I felt as if the Tysabri was "wearing off"

It's much better now, or I have gotten used to it. Hard to say since I am coming up on #34 and things tend to bleeennnd in after a few years!

I missed one infusion due to appendicitis and removal of the offending organ, and I thought it would affect me, but honestly, I was in so much pain from the surgery, and the recovery, that I was glad I didn't have to deal with infusion on top of everything else! I had major abdominal surgery because they didn't know what it was (unusual presentation)

I don't think there is much you CAN do about it. The drug company and most docs are not likely to change the schedule and give it to you any earlier than 4 weeks after your last infusion, especially now with all the new PML news. What exactly do you feel when you feel it wears off?

Maryann, I am so happy for you!!!!!!!!!!!!!!!!

DITTO MaryAnn!!! I KNOW I posted to you but it seems to be lost somewhere, so congrats again!

Really tired and can't move at all. Last week I got real grumpy too! I think I'm going to be jonesing for my infusion every month as well.

Although I may be going through menopause. Anyone had experience with taking hormones? Does it help and is it hard to balance them?

I missed one infusion due to appendicitis and removal of the offending organ, and I thought it would affect me, but honestly, I was in so much pain from the surgery, and the recovery, that I was glad I didn't have to deal with infusion on top of everything else! I had major abdominal surgery because they didn't know what it was (unusual presentation)


I also had major abdominal surgery last year from a twisted intestine - emergency surgery with 18 staples! Anyone else had this? Wonder if it's Tysabri related at all? I sure seem to have a lot more problems with other things since started Tysabri - enlarged lymph nodes, nail fungus, intestinal blockages, etc.

I don't recall any other major problems while on Tysabri. I am hardly ever sick, can't remember the last time I even had a cold. No strange things, no infections, no problems. I feel like I am boring when I post after infusions...no problems, no concerns, but boring is ok for me. I truly feel for those people who have problems. I just don't have them.

I don't associate the appendicitis with Tysabri, nor do my doctors. I more than likely would have still had my infusion if it hadn't been scheduled while I was still in the hospital recovering.

I'm finding more and more chatter about a vaccine for PML. Not sure whether there is something in the works or not but it would be a life changer for those who are worried about PML and want to stay on Tysabri or try it.

If anyone finds anything at all about tis, even if it's just talking abut it, plese post here with links and I will try to track something down a to who and when, etc.

THANKS!

(oh yeah, about the infection thing? I forgot about the salmonella two years ago that laid me up for weeks! Again I don't think it was related to Ty, I just ate some chicken!!!)

I went for my MRI today. I got the disk as usual for my records. I got to go through the new 3T MRI machine. It was louder, but it's roomier and it seemed a LOT faster! The images were crystal clear when compared to images from the old machine. The hospital donated their old machine to a hospital in an eastern block nation (can't remember where right now) so it will keep on churning out images for a country that doesn't have access to new machinery.

As soon as I got home, rather than going right to bed I slapped the disk in my computer and compared the scan to previous MRIs. I know where my lesions were since neuros have pointed them out to me for years now.

The lights are still out!

I can't wait for Dr. Bob the radiologist to file his report. I couldn't see anything new and I looked at every scan and compared it to the same view from each of my previous MRIs. I wish I could make some sort of moving image to show what happens, it truly is like lights fading out and not coming back on. There was one big lesion that was 22 or 25 mm? in size and it's gone completely now. I couldn't find it at all! My lovely hemangioma is still there and still the same size, sort of weird to see it on every image, off to the left and lit up like a streetlight!

I made sure to cross my eyes during every other image to give radiology and the neuro a good laugh.

On a personal level, just completed 3 years on Tysabri with my infusion yesterday after taking 1 month off in November (was being tested for neutralizing antibodies after my late summer relapse)

At an investment conference yesterday, Elan provided additional info on the coming JCV Antibody Assay and how they and Biogen are communicating (monthly updates to docs) current PML info. The assay is expected early next year after they complete all the necessary steps including working with key opinion leaders (KOLs) on how the assay should be used.

http://webcastingplayer.corporate-ir.net/player/playerHOST.aspx?c=88326&EventId=2576999&StreamId=1 407015&TIK={eace2cb5-fb18-4347-837c-cadbaf43d64e}&RGS=3&IndexId=