I’m figuratively jumping for joy here: my nurse has just made contact to say that NICE has approved Tysabri for me and I cannot wait to start! I’m JCV- (at the mo - obviously I know it could change), so I am massively relieved because it reduces the worry for my loved-ones and also because my neuro didn’t seem keen to prescribe it if I was JCV+ even with low antibody titres.
I’ve tried searching the forums for threads about Tysabri , but can only find a couple back in 2011 and 2012 which weren’t really relevant, as I want to know if current or past users have any tips about how to mitigate the more common side-effects? I’ve not spoken with the infusion specialist yet, so suspect that she will have some advice, but it’s always good to hear from people who have the stuff flowing through their veins!
i have only had 4 infusions so far. feel nothing during the treatment. feel drunk the next day tho after the last dose this lasted 4+ days. i havent seen anything positive as yet but i understand it may take a while. my eyesight and right side are worse but i have no idea if this would have happened anyway…
am guessing for myself that far too much damage has already been done and nothing will help it. sorry if that sounds negative-far from it-i am realistic and dont like false hope. it does work wonderfully for some-i hope u r one of them
I’ve been on it since June, dont feel any different since starting it however not had any further relapses since. This is a positive for me as I was having regular aggresive relapses so it seems to have put a halt to them. Tysabri wont make your current symptoms any better, but it should slow the progression of MS, thats what its supposed to do. I get more tired in the week prior to the infusion and wiped out on the day of infusion and these are the only side effects for me. Im also JC- however even some who are JC+ still have it and sing its praises. It also has its own Facebook group which is full of people on it and another great source of info if your interested. Personally I’m delighted that I’m on it and sincereley hope it works well for you. Good luck with it all. Mick.