@n1t1 

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n1t1

Tysabri

I am looking to get tested for JCV and start Tysabri soon. Anyone out there on this drug? If so, how have you found it honestly?
@Sewing-chick

I was on Tysabri for four years. I deteriorated massively over that time. I was scared to come off because of the danger of rebound relapses but it was the wrong drug for me and now I wish I had never taken it. I had been diagnosed for 12 years and was walking with one stick when I started on it - I think it works better for people earlier in the disease. I'd still advise you to look into Cladribine before you start on Tysabri. I've had two doses of that now and I wish I'd had that instead of the Tysabri.

@jj5sim

Hi I started on Tysabri 19 months ago and it has changed my life for the better. Before tysabri I was getting a relapse every 3 months but since starting it I have not had a relapse. There are 17 of us on it in Aberdeen and to date no relapses for any of us (according to the MS nurses the last time I asked a couple of months ago). I am JC positive, as are the four other people that get it at the same time as me. They have been on it a lot longer than I have, 3, 4,6 and eights years roughly. As far as the risk of PML it is very much an individual case by case thing. The MS nurses look out for early signs of PML as you see them every month and if they suspect it treatment would stop straight away. Even after two years I will be staying on Tysabri as long as my neurologist is happy for me to do so. Tysabri for me has given me my life back and cannot speak highly enough about it. I hope you manage to find meds that suit you, good luck.