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@rickys1 

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rickys1

nervous

Hey :) im starting my first tysabri (natiluzumab) infusion on the 17th september , im pretty nervous about the possible side effects but realise it is what it is i guess! Anyway ,have any of you been on it? if so how are you ,does it live up to the hype that the new zealand neurologists make it out to be ..i know everyones different but feedback pls :)
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@Eleanor
@Eleanor
 

Hello nervous, I have only been on Tysabri almost two years, and like you was somewhat scared about the thought of PML (& in the early drug trials, the risk of death from undetected PML!!) I am totally reassured that if I test positive for the JC virus (which I now have), then after 2 years if my JC antibody level is severe enough I will get regular MR Scans to look for signs of PML. If they find it, they do a 'plasma cleanse' which cleans all the Tysabri out of your body & prevents the PML from progressing. Tysabri was the best thing I ever did, I've had no side effects and have some great discussions with other patients during my infusion appointments. I've met people, old and young some of which have been on it for many years. Speak to your MS nurse about PML and get some reassurance about how they will monitor things, they are clued up these days compared to in the initial stages. I see it as a long term solution and genuinely think I could be in a wheelchair now if it wasn't for Tysabri but as it is I am living a better life now than before I went on it. If you have any other worries, I'm more than happy to chat to you. Drop me an email. Good luck! Love Eleanor

@phoebech
@phoebech
 

Hi there! Been on it for 4 and a bit years now. Had been relapsing big time every few months and losing out on huge chunks of my life. Haven't relapsed since my first infusion. No side effects for me and I feel pretty much the same every day in between infusions. Totally understand your nervousness around PML but there's much more data to work with these days. I had a few weeks driving myself nuts thinking about the stats but once I got started and saw the effects I was convinced I'd made the right choice.