Last reply 7 years ago
Tysabri.. are you on this too?

Hi everyone

I’m 22 and was diagnosed in August this year with Highly Active RR MS after 2 months of relapsing. It started off with me waking up after a big night out and not being able to balance… then snowballed from there. Ive gone from 3 lesions to about 10-13 in that time hence why my neurologist has put me on Tysabri.

I had my first infusion on 10th September, after going 4 weeks without relapsing Im really hoping that now ive started on this drug i will remain relapse free for a good while!

Is anyone else on Tysabri? If you are, how are you finding it?

xxx K xxx

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gav
7 years ago

I’ve been on Tysabri for over 15 months now, and in that time I’ve been relapse free 🙂 Longest I’ve gone without a relapse since my whole MS thing started kicking off nearly seven years ago now. Obviously, results diffeer for different people, but heres hoping for you 🙂

Gav


cedelle
7 years ago

hi, I am 22 and was diagnosed when I was 18, I had my first infusion on Sept 3rd , can’t honestly say I have experienced anything particularly positive yet but hopefully the magic juice will live up to its name! xx


gav
7 years ago

I would say not to expect too much, too soon. It took 9 or 10 infusions before I started to notice a difference.


vikster37
7 years ago

I was on tysabri for 2 years then I had a really bad reaction to it and I had 2 relapses within 6 months so I wouln’t expect too much from it everyone is different though so good luck with it


becks
7 years ago

love it love it love it. had 8 infusions and started seeing benefits after 2 months. i was relapsing every 4 months over the last 3 years until i went onto TY and now its 7 months and no sign of deterioration. my walking has gone from 10 steps on 2 crutches before collapsing in a heap to walking unaided indoors and short distances on 2 sticks outdoors. my cognition has improved to the level it was about 8 years ago. i am like a whole new person and friends and family cannot believe the difference in me and the reduction in disability. My consultant never expected the additional benefits i have shown and was aiming for just the extension of time between relapses. others on the ward where i have my infusion have had the gap in between relapses but no other benefits.

I found that after 4 infusions i’ve started getting a feeling of being completely wiped out immediately follwing the infudsion which lasts for 24 hrs but this is a small price to pay for the benefits i’ve seen 🙂


captainkristoff
7 years ago

Infusion No.11 two weeks. I feel so SO much better as a result. My balance is massively improved to the extent that I can ride my bike again and all the little itches and bouts of sensitivity and numbness has all gone. I can’t really run for long, a quick dash for a bus but that’s all (touch wood) atm. Oh and I still get tired a little more easily, by about 9:30 I’m pretty shattered, but for the whole day leading up to that I’m pretty freaking good! 😀


iang
7 years ago

HI TYSABRI IS WORKING FOR ME TOO BEFORE I WAS OFF BALANCE AND WALKING WAS ALL OVER . MY BALANCE HAS COME BACKSOME BUT NOT ALL AND WALKING IS A LOT BETTER . NO RELAPSES IN 3 AND A HALF PLUS YEARS….IAN G X


wooders89
7 years ago

Thanks so much for all the replies I’ve had to this so far. Please keep posting your experience because it’s really helping me learn/get answers 🙂
Also, Captain Kristoff- so you used to get random numbness too? I do- usually in my left hand but it comes and goes, maybe Ty will reduce this for me too!
Xx

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