I will be going on Tysabri once I have had a mri scan. I have been on Tecfidera for the last 7 months but my ms has not improved and I have had one relapse in May.
So my Consultant wants me on Tysabri. I had my blood taken last week for the JC virus.
I have been told that my ms symptoms and my walking / balance might improve when I am on Tysabri.They say how I am after six months will probably be my base line.
I must admit I was bit concerned about pml but if I can slow the ms down then I have to give it a go for me and my family. And i will be closely monitored.
Have any other Tysabri users seen improvement in walking etc ?
Do you experience any side effects with the infusion ?
I was on Tysabri for 2.5 years after 2 rubbish years on REBIF. I personally felt so much better on Tysabri - my walking did improve (even though my consultant said that Tysabri wouldnt improve what is already affected). I didnt get much in the way of side effects from it - after the first couple of infusions I felt a bit groggy and had a headache - but nothing major at all, and sometimes I felt that was actually down to sitting in a warm room not doing much for a few hours.
I understand your concern about PML - I was JC+ from the start, but for me personally it was really worth it. I would jump at the chance to go back on it.
Good luck to you - I hope it does for you what it did for me.
Hi. I can’t speak highly enough of Tysabri! Everyone is different, but from my experience I can’t recommend it enough!
I have recently changed to Fingolimod after being on Tysabri for 4 years and just wanted to say I personally found it to be very effective! I always felt tired for the rest of the day after my infusion, sometimes the day after as well and sometimes a bit ‘thick headed’, but never had any other side effects.
I was dx in 1997 and slowly deteriorated over the years. I first went onto dmd Copaxone in 2008 after severe relapses and it worked successfully until Jan 2011 when I started to have major relapses every 2-3weeks.
This is when I started on Tysabri as I was unable to stand or even sit unaided. I had extreme double vision, vertigo, major fatigue and much more. Basically I had no quality of life whatsoever. The Tysabi was ‘a life saver’! The positive effects of started almost from the first couple of infusions and I continued to improve as the months went on. As usual, as after any relapse, I didn’t return back to exactly as I was before and I do still have my ‘daily symptoms’, but I don’t have to use my wheelchair much and when I see myself today I am still amazed that after being so bad, Tysabri gave me my life back. Despite me also being JC virus positive I had no hesitation being on.
Hope it works as well for you and hope this gives you some positive thinking.