Forum

Waiting to start Tysabri

Hi,

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 ?

Thanks

Hi Irons

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.

x

Thanks Hayley

​It’s good to know you found Tysabri to be good. It’s just a lot of info to get into my head at the moment.

I am not very good at waiting, I would rather get started today that way I don’t get much time to think about things.

Hope Ms isn’t giving you too many problems.

Take care

Irons

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.

Regards Equus

Thanks Equus for sharing your experience of Tysabri.

Hopefully I will find it helpful for me as well.