Well I’ve been offered tysabri… I am JC positive and highest risk group for developing PML… but a better quality of life woudl be nice… so who’s on it, how did it help you, any bad side effects? Any info would be greatly appreciated!
I’m on it but I’m JCV negative so in a much lower risk group.I’d took the view that I was having it even if I was JCV positive as the risk is much lower in the first two years. I’ve only had 2 infusions so far and the only side affect I’ve had is a bit more fatigue/tiredness later that day and the day after. It’s probably too early to tell if I’m having any benefit from it yet.
It’s a desicion you (and those closest to you) should only take after making sure you know all the pros and cons so feel free to keep asking questions
I’ve been on Tysabri for 3 years now. I’m JCV negative, but would still stay on it even if I became positive - if fact, next time I’m invited for the blood test, I think I don’t want it done - it won’t change my decision.
I love Tysabri. I have absolutely no side effects - I have the infusion on a Friday afternoon and then do my Friday Sainsburys food shop no problem!
When I first started I didn’t notice any immediate change but after about 6 months, things did improve a bit - I was even able to run a bit on the treadmill at the gym. However, having said that, my right leg has recently started spasming and is gradually getting weaker and now I’m beginning to feel weakess in my right arm, so it hasn’t stopped everything.
Although I’m sure it protected me from having relapses when I had a heavy cold and two separate infections.
I really recommend it.
Good luck
Emma x
Hi
im on Tysabri JC neg , 5 months now no side effects still have a few symptoms left from last years relapse ( pre diagnoses ) but seem ok since been on it, although meeting neuro next week as wants me on campath.
i want to stay on it tho.
gray
Anyone out there JC positive on it?
Hi
I’ve been on it for about 4 or 5 years and am JC positive. I’ve carried on with it as I’ve found it helpful - things have been relatively stable. And, other than feeling knackered for a day or two after I’ve had an infusion, I don’t really get any other side effects. The team are very good at monitoring us for any possible signs of PML, and I feel in safe hands.
When I started it I decided with my neuro that I’d try it for a couple of years then see how I felt about carrying on, so you could always try it for a little while. But obviously the future’s an unknown, and it’s always a risk. How much longer will I carry on with it? Who knows! But I’m happy with it for now, s for the short term at least, I’ll keep going.
There are other options though, so if you decide not to take the risk there’s other things you can try.
Dan
Has anyone been really bad hardly able to walk, balance so bad can’t carry a drink without spilling, etc, then took it and improved ?? Walk again stand on two feet more than 5mins without holding on??
Squiggly my balance was that bad. I bought a bosun ball and use it every day and there has been huge improvement. It’s hard at first and you may need someone to hold you till you get better but so worth it
Sorry, my tablet auto corrected Squiffy to Squiggly!