Hi, I’m newly diagnosed (more or less) with RRMS. My neuro has been involved in lots of research into ms and has recommended I start this treatment - once we have confirmation from the MRI. He speaks very highly of it - just wondered - anyone else on it and what are your experiences? Thanks.

Hello, Im 3 years into my Tysabri journey. Its good stuff. No relapses for 3 years, and it has slowed down the progression. Although I am not a quick as I used to be, after 17 years I am still walking and working (which I suppose is a good thing).

Yes im JC positive, and the chances of getting PML rises, but as my MS Nurse told me, I have more chance of getting something else nasty rather than my brain turning into jelly !

Which one am I putting my money on ? … well Tysabri is a winner for me .

Go for it

Hi fairy dust I was 3/4 of the way to get it had jc virus test then I was told I didn’t meet nice. Criteria. Oh well I will now start rebiff44. The good new is I haven’t got worse since dx. Glad it ok for you

I’ve tried everything! I am now 5 months into Tysabri, I wasn’t that impressed to start with, but its growing on me. I suppose after relapsing almost constantly for 10 months it takes a lot of work to straighten things out. This is the least traumatic treatment i’ve had. Avonex sent me mad, Betaferon made me so ill, i developed an allergic reaction to copaxone, and got quite needle phobic (but it kept me on an even keel for a good while) and steroids are now a no no too as I’ve had too many and my bones are shot.

Thanks all, once I’ve got the go ahead I’ll go for it - anything that helps or slows progression has got to be worth it. Bit scarey not having long term research results but I guess you’ve got to focus on the here and now, after all none of us know what’s round the corner for anyone… xx

Hi Hairbear,

I’ve just finnished my 4th year starting my 5th in 2 weeks time and been relapse free since starting and that was going from relapsing every 4 or 5 weeks and almost 2 years of relapsing like that really took its toll but thank goodness I’m happy with the way things have turned out for me, I’m JC negative but I don’t think about it going from negative to positive could change anytime I only found out I was negative a couple of mouths ago and I’d almost done 4 years Tysabri has been amazing for me and the small risk of PML is nothing when I seen the real damage MS could do it left to do its worst.

Mark x

Thanks Mark - I’ve decided to go for it, anything that stops these awful relapses had got to be worth it. Just need my MRI to back it up then I start the ball rolling. Just out of interest - is there a chance it could ease the symptoms I’ve got ie: walking like a drunk?? Thanks again x

Before I started Tysabri I was in a wheelchair most of the time 3 months on Tysabri I could get by with a crutch 7 months I didn’t even need that must of the time when I’m walking I think I seem nornmal I do take a wee woddle sometimes and maybe some people could think I had a drink when that happens but must of the time I’m fine.

If your on Facebook and fancy talking to loads of UK and Irish people on Tysabri there’s a closed group for those on or hoping to start Tysabri if your from the UK or Ireland its UK Tysabri users (Natalizumab) if your interested they’ll answer all the questions you have

Mark x

Thanks Mark, neuro wants me to have MRI first which is in 2 weeks. Providing that backs up his diagnosis then I’ll definitely be opting for this treatment. Glad to hear you’re doing so well. I’ll check out the Facebook group once I know for sure what my options are! :slight_smile:

Quick update. Diagnosis confirmed (boooo), also confirmation received that tysabri is one if my options (yayyyy) and that they’ll discuss this with me at my appt in 3 weeks. Have been reading the ms decisions website and just want to get on with it now!!! How long does it usually take before I can expect my first infusion? I’ve also joined the Facebook page Mark - I’m assuming it won’t be published on my wall as I don’t want all my “stalkers” to know my business? The sun is shining and I’m feeling good - hope you all are too! :slight_smile:

It was 13 weeks before I got Tysabri from when I was told I could get it but in my case it took that long because I kept getting urine infections and wasn’t aloud to get till they cleared up.

It should have been 6 weeks form I was told I was to get Tysabri I was on Avonex at the time and the 6 weeks was to allow Avonex to get out of my system.

The Facebook is a closed group no one only members can see what you post if you have a friend on Facebook who is also a member of the Tysabri group it will show up on the home page that they posted on the Tysabri group but dont worry thats just because there your friend and a memember of the group also and only you can see that notification.

Your real name wouldn’t be Jenny someone was added to the group called Jenny today by 1 of the mods and then left the group the mod was wondering what went wrong.

Mark x

Hi yes that was me fiddling about with my settings i think I’ll just start again from scratch!

Hello everyone,

I’m on the ASCEND trial. Basically its looking at how Tysabri can reduce progression of MS for those with SPMS. I had my first infusion at the start of Sept. Double blind trial, so the big question s - am I on placebo or not. I’m JC positive but got to wait for another 18 to 24 months before that might kick in.

Going to write a blog on my website, www.aid4disabled.com, should be live by the end of September. To be honest it does not seem to have made a blind bit of difference so far but guess its early days.

Think I will find writing the blog quite therapeutic cos the MS is really getting me down at the moment. This bloody disease has robbed me of so much. Must not grumble cos there are other people that are a lot worse than me.

Good luck,