Patients Multiple sclerosis
Topic of the discussion
Posted on 29/12/2014 00:11
Hi anyone on tysabri? Doc wants me to go on it but side effects are pretty drastic ie: severe disability and or death. Waiting for jct results first.
Dont know what to do.
Beginning of the discussion - 03/01/2015Have you tried natalizumab (Tysabri) for your MS? https://www.carenity.co.uk/forum/multiple-sclerosis/your-opinion-on-multiple-sclerosis-treatments/tysabri-172
Posted on 03/01/2015 21:04
I know quite a few people who are on it and have no problems ,
they seem to love it , i feel quite jealous when the go on about going
to get juiced up and feeling good afterwards
i think its a kind of a last resort for aggressive MS . so good luck on your decision, what ever you choose !
Posted on 04/01/2015 10:36
Posted on 27/01/2015 18:57
I start next week on it. I've been misdiagnosed for 7+ years so I'm playing catch up in terms of treatment. I know the side effects on paper are scary but they manage the risks pretty well and the alternative is less effective treatment which is not an option for me. I don't even know the result of my jcv test, but that won't affect my decision.
Posted on 05/02/2015 11:15
I had my first infusion. I'm still alive, so it started well!
I'm being treated by a good bunch of people and the other patients also seem nice so it won't be the worst two hours I spend each month.
Posted on 13/05/2015 14:52
Those are great news Statto!!!! Keep us posted on what happens and I am really glad that you find the other patients nice! :)
Posted on 16/05/2015 19:16
My partner has been on this for 18months since being diagnosed with progressive m.s, but he don't seem to feel any different, he was having steroids the 1st lot worked really well from the start but after that nothing so was taken of them, he is also on 600mg gabrepentin ( not sure how you spell it) 3 times a day but still suffers with balance and pain all the time. Has anybody else tried anything that might work better for him ? Would be interested to know.
Posted on 17/05/2015 10:22
Well I've now had four infusions. I'm doing well but as I'm recovering from two bad relapses last year I wasn't sure if my recovery to date has been due to natural healing of the body or the Tysabri. Possibly a combination of both.
Anyway one of the issues I've had is a weakness in my left knee. My left leg already has permanent nerve damage thanks to a disc injury (like I needed more problems), so it was really giving me serious issues with my mobility. It was improving but very slowly and I could maybe do one or two steps without my walking stick. However after my last infusion quite literally overnight my knee has returned to nearly full strength, with me only needing to get back some muscle size. It's amazing and I now mostly walk around the house without my cane. A huge improvement and definitely due to the Tysabri. It's really now made a massive difference to my mobility and means getting out is much easier.
I hope others get just as good an experience.
Posted on 17/05/2015 10:29
I hope you don't mind me asking this but Tysabri is still being tested on progressive ms. So is your partner on the current trial? I don't know much about progressive MS as I understand that different drugs are used for it.
Posted on 17/05/2015 11:03
He was just started on this from the start by infusion every 28 days at the hospital , we weren't told about any trial.