Tysabri - Anyone who has started the treatment?

Everyday living
1

Hi all,

Long story short - I was diagnosed 3 years ago and have had a number of relapses and after being on Copaxone and not finding this to be the right treatment for me…And recently having a pretty hefty relapse I asked about Tysabri.

Just wondering what people’s thoughts were and if anyone had experience of this treatment!?

Thanks in advance!

Ally xx

2

Hi Ally, I have been on Tysabri for 3 years now. It’s the best thing ever for me. I was having relapse after relapse before I started on Tysabri . I haven’t had a relapse while I have been on it. Everyone I know who is on Tysabri think it’s the best. The treatment is easy having a infusion every 4 weeks. It’s really like having a a coffee morning once a month. Hopefully Tysabri will be great for you as well.

3

Hi Ally I’ve been on Tysabri for almost four years now, It’s worked wonders for me as I was relapsing almost constantly when I was on betaferon injections. I was sceptical about going onto the Tysabri due to the risk of PML but I’m so pleased I chose to go onto it. Really has changed my life/situation for the better. All the best Ian

4

Me too !! I just had T58 on Tuesday. It took quite a while to turn the aggressiveness of my MS around but it has and it’s the only thing that has been effective in fighting my MonSter. I agreed to try it because the efficacy rates amongst patients at the hospital where I am, were so impressive. And I haven’t regretted the decision.

5

Hi Ally

I was on it for about 6 or 7 years. It’s the best one I’ve been on. I had hardly any side effects. I’d be knackered after my infusion, but that was it. I eventually only decided to come off it as my PML risk was getting quite high.

Dan

6

Hi Ally,

I know this post is old but I’m in the exactly same position as you was now, just wondering how you got on with Tysabri? Any changes? Feeling better/worse? Or any side effects?

Thanks

Dani. X

7

Hi Dani, I was on Tyasbri for a while around 4 years ago and honestly I’d still be on it if my neuro would have allowed it. Apparently I ended up moving it th high risk of the bad side effect category and neuro took me of it. :frowning: On the plus side it shows that my Neuro wouldn’t allow me to take something that could be bad for me.

I always felt much better for the 2-3 weeks after the infusion. Would start to feel a bit more tired the weekd before my next infusion. Assume thats when it’s levels in my system had dropped to it’s lowest levels. No other side effects for me besides that. I was on elbow crunches when I started Ty it kept relapses at bay long enough I managed to recover enough I no longer needed them.

Knew one guy that had been in a wheelchair when he started Ty and was on crunches when I last saw him.

8

Thanks so much for replying, really reassuring! I’m hopeful it works for me and no more relapses!