Hi I have had 5 infusions of Tysabri and have not had/noticed any improvements in my walking ability, writing/holding a pen etc, bladder control or anything else for that matter. I have had two very bad relapses since starting Tysabri. If you are having this treatment, how many infusions did you have before you began to notice any improvement? I desperately want to have my life back. I have been virtually confined to a wheelchair for nearly a year and hate, hate, hate it. Thanks for replying. Tracy
Sorry to say but I don’t think any improvements are guaranteed nor is it guaranteed to work for everyone relapse wise. I was about 2-4 infusions and most people I’ve spoke to were about the same before I noticed any improvement. I think the neuros and nurses hype tysabri up waaaay too much. My nurse was more like a salesperson than a medical professional.
Although for me the improvements were minimal at best. I can stll only walk about 400-500 metres. My bladder control got worse. At lost of other things I’ve noticed no difference whatsoever like balance and cognitive fuction.
After 3 I got out of my wheelchair and could walk with cruthes it was around my 7th infusion that I could walk without them.
I started Tysabri in August 2008 but it was November 2010 before I could write again I can’t write very well but at least I can sign my name and write a couple of lines but I’m happy with that before I couldn’t even hold a pen I’d lost all use of my right arm
It was only at the begining of last year that the fatigue went away my walking isn’t great but I get by It was with hard work and physio that I got me to where I am today for me Tysabri stopped the relapses and stablised my MS before I started Tysabri I was having a relapse every 4 or 5 weeks and they wheren’t mild ones I was hospitalised everytime at my worst I only had the use of my left arm my swollow speech everything that MS could throw at you I got thank God I never had pain but I needed help just to get washed and dressed and as you could imagine I got very depressed and even thought about suicied.
My bladder has never worked again I have to use a catheter but If thats all I have to worry about I’ll be more then happy yes there are people on Tysabri that haven’t done so well and there are people who’ve done better but not in my wildest dreams did I ever expect it to work like this I was told it may ease the relapses I was having that it wouldn’t improve any damage MS had done the makers of Tysabri will tell you that also I just wanted a break something that may keep me out of hospital for at least a few months and let me be at home and it has done that
Thank you everyone for replying. I will stick with it and hope I can see an improvement soon. Tracy