Hi, wondered if there is anybody out there who is using Tysabri or have any expereince or advice regarding this tratment>
my husband is considering going on this treatment - but would like any info from any ms users before making a final decision
many thanks
Hi,
I would recommend Tysabri as a real life changer. Having infusion number 23 tomorrow, and have found a massive difference to my life since taking it. I would almost say it has given me my life back up to a point - however still suffer with the fatigue.
I think your husband would be well advised to try it out - but you really do have to bear with it, as it doesn't seem to be doing anything up till about infusion number 8 or 9 - then it starts to kick in. I have not had a relapse since starting it - feel rather groggy the same day and the day after - still do now, but no relapsing is fabulous.
Hope this is of some help to you and your husband.
Best of luck, take care,
Lorraine x
It is brilliant!!
Has been for me anyway.
I was given no choice, its ty or nothing and no chance of life getting easier. But so far and I've only had 1 infusion its not made a massive difference.
There have been a lot of discussions about Tysabri on here in recent months. I would suggest that you do a search on the content of this Everyday Living board and have a browse.
I've been on it a bit over a year now, and it has been a year without relapses, which makes a very nice change!
Alison
x
Hi, I started Tysabri in Febuary so have only had three infusions. I have noticed I have a bit more energy and that some symptoms have settled down.
From advice I had on here it seems that I'll notice more improvements as time goes on. I was relapsing constantly before I started it. I'm very happy to be on it.Good luck with everything,xxjo
Hi I've been on Tysabri since August 2008 I just had my 46th infusion there on Thursday Its given me my life back not 100% but a life I'm more then happy with as Lorraine said you need to stick with it. It was after 3 infusions before I didn't have to use a wheelchair I used crutches till after my 7th but now I dont need anything If I'm going out walk around the shops for an hour or 2 I'll take a crutch. It was after 2 years that the fatigue went and hasn't came back since.
I was having a relapse which needed hospital ever 4 or 5 weeks before Tysabri even while I was on Avonex but since I've been on Tysabri I've not had one my MS is now stable and has shown improvement I don't just feel it the last 3 MRIs prove it.
The only thing I can say is please don't be thinking its a cure and after an infusion or 2 you'll by feeling the full benefits of it you may even feel very tired after your infusion but in time that'll pass.
Its the best choice I've ever made going on Tysabri.
Yes the is a very low risk of PML but I think everyone has a blood test now before they go for Tysabri in your negitive I think there's is no or a very very low chance you can get PML and even if your positive you can still go on Tysabri it just lets you know what you maybe up against, I myself only had the test done last week I haven't had the results back yet it really doesn't matter I didn't even want the test done its not gona change how I feel about Tysabri I'd no life before it and why would I risk going back to that.
I really hope your husband makes the right choice for himself I'd never dream of telling you what you both should or shouldn't do I can only tell you my story.
Mark x
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