@richi1990 

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richi1990

Anyone using Tysabri?

Im about to start tysabri, but that drug really creeps me out... I dont like the idea of being able to get pml :/ Suggests, comments, anything?
@lynne

Im on tysabri. have been for about 15months. it does nothing for me and am having lots of nasty relapses, but that is just me. i talk to lots of people there when i have treatment and they have felt the benefit. one thing i would say is if you start it, get contact numbers that you can be guarenteed support from if you have worries.....even if it is the weekedn. i have conccerns at the mo, its saturday and although i have spoken to 2hospitals and one doctor, and explained as best i can with the symtoms i have, ive been sent home with a 'what do you want us to do'kick up the ass. i am very positive with my MS even when very ill but i currently feel like i have alzheimers and its v scary. so id say try the drug it might work for you but make sure you have PROPER advice available ....even on a weekend or festival. best of luck with your decision

@Gav

I'vwe been on Tysabri for 16 months and its doing wonders for me, but then everyone is different. I've been relapse free in that time and the break has given my body a chance to repair some of the damage on my MRI scan. As for the pml thing, its a little like saying I'm not going to cross the road 'cause I might get run over. They know what they're looking for now, so if they're very cautious with it. The chances of contracting pml if you're jc positive in the first two years is something like one in 500 or 600, if you're negative its over one in 2000. I understand the fear, but just be assured the doctors know what they're doing :-)