Hi All I’m 40 years old and have had RRMS for 10 years. I’m fairly well and still work full-time and lead a fairly ‘normal’ life. I had a big relapse in July last year and Neurologist decided to take me off Rebif and I started Tysabri in November, I had my third infusion last week. No relapses since I’ve been on it -yay!!! No improvement either - boo!!! Just wondered how many people see an improvement, I know not everyone does and believe me, I’m grateful for no relapses … BUT, I hope for slight improvement. My MS Nurse said that it’s too early to call anything - I should wait until my fifth/sixth infusion. Thanks in advance for your replies, Helen x
Hi Helen
I’m on Tysabri since August 2008 I just had my 56th infusion today and not had a relapses since I started that its self for me is amazing before that I had really agressive RRMS relapsing every 4 or 5 weeks and ending up in a wheelchair because of it I only had the use of my upper left side really bad fatigue none or very little control over my bladder and bowels.
Things really started to happen after my 7th infusion I was out of a wheelchair and walking without crutches I was out of a wheelchair after 3 infusion but needed crutches.
I’d small improvements after every infusion but after 2 years the fatigue went away my bowel got alot better I even found I was able to go to the gym. I still have to self catheterise and a little weakness in my right leg but if thats all I’ll be more than happy.
It takes time its not a quick fix and there are no guarantees things will improve the way it has for me I’m 1 of the lucky ones.
If your on Facebook there’s a great closed group for uk Tysabri users you might find it really helpful and interesting if your interested its,
UK Tysabri users (Natalizumab)
there’s about 270 and growing in the group there’s always someone that can answer any questions you may have
Mark x
Helen
I stopped counting infusions when I reached no. 60. I have had one horrific relapse but that was caused by a serious bladder infection.
Like Mark I started to notice small improvements after the 7th infusion. I was in my best condition ever before the relapse. I left hospital in a wheelchair with many people thinking that was where I’d remain. Four months later the w/c went back in the cupboard and I was using a stick. I now only use a stick or one elbow crutch if I am alone and walking on dodgy ground [like pavements!].
I am now back in that good place, although I can’t say my fatigue has improved. I have not met anyone who hasn’t seen some physical improvement on Tysabri. It has been the best thing that ever happened for me.
Afraid I’ve been on Tysabri since September 2011 and haven’t seen any improvements. On the contrary, last October, after a year on it, I had to start using two sticks, having used one for a couple of years (back on one stick now after starting on Fampyra but that’s another story). The average reduction in deterioration while on Tysabri is about 2/3. I mean you will only lose 2/3 of the function that you would have lost if you hadn’t been on the drug. But that’s an average - some people will stop losing function and even gain it back. Soon after I started, I met a guy who had been on Tysabri for seven years and had gone over that time from needing two sticks to looking like there was nothing wrong with him at all. No sticks, not even the tiniest hint of a limp! That guy didn’t see any deterioration in his first year on the drug and started to improve after that. He is someone who has seen 100% reduction in deterioration while on Tysabri. Since the average reduction is 66%, there will be people who see only 33% reduction. I think I’m probably at the low end. Here’s hoping you’re at the high end.
Hi,
I’m on ASCEND trial, Tysabri for SPMS. Double blind so could be on placebo.
I have noticed that spasms and restless legs have disappeared. I do seem to be walking better but still very stiff. Balance has got slightly worse and drop-foot no change. Started monthly infusions in September 2012.
It does slow down the progression in RRMS very successfully. Will it help SPMS, well they would not to the Phase 3 trial unless the Phase 1 and 2 trials were a success.I’m pleased its worked for you guys, lets hope it helps me .
Patrick