I started it in October 2011. I have never had any problems with having the drug, apart from a lot of tiredness for the four days after the infusion. I have lost a lot of ground since I’ve been on it - I was able to drive and walk with one stick when I started it. Now I can walk only short distances and have been using two sticks for more than a year. I have also seen improvements - in particular in my bladder function improved beyond recognition about 10 months ago and very recently I have been able to walk with one stick.
I have a suspicion that, for me at least, part of the problem was that I didn’t have the infusions regularly enough. I had about 15 months where I had Tysabri every four weeks. During the following year, I had to go to four and a half weeks between infusions on four different occasions. I think it made a big difference to how effective the drug was. For the whole of the last year I have had it every four weeks and now I’m starting to see improvements in my walking, stamina and balance.
Maybe the bigger than recommended gaps didn’t make a difference (and they weren’t under my control anyway) but I still wish I had been able to have Tysabri every four weeks for the whole time I have been on it.
I tested positive for the JC virus for the first time about 6 months ago but I have a low viral load and the doctors aren’t concerned about it.