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Starting Tysabri

Hi

so after failing to stabilise on gilenya the neuro has decided I need tysabri. It’s a disappointing that Gilenya didn’t work and my Ms is still ‘highly active’. So waiting for my jcv test and the gilenya to flush out then i will start. I know it’s a very effective treatment and am hopeful. What are others experiences of tysabri good and bad?

Thanks

ssdd

TBH I just wish that I had started sooner. After many good years on Avonex, my MS had got to strong for that, and I had a couple of years of grim struggle and lost a lot of ground that I won’t ever get back. Then Tysabri arrived and restored peace and calm. You won’t have try try hard to imagine how good that felt (and still feels).

I hope that it really suits you too. It really is one of the game-changers; it can stop rampaging MS in its tracks.

Good luck.

Alison

Thanks Alison. I’m really hoping to get to that place! Starting to feel like my last hope, possibly a tad dramatic but so desperate for ‘remission’!

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I started it in October 2011. I have never had any problems with having the drug, apart from a lot of tiredness for the four days after the infusion. I have lost a lot of ground since I’ve been on it - I was able to drive and walk with one stick when I started it. Now I can walk only short distances and have been using two sticks for more than a year. I have also seen improvements - in particular in my bladder function improved beyond recognition about 10 months ago and very recently I have been able to walk with one stick.

I have a suspicion that, for me at least, part of the problem was that I didn’t have the infusions regularly enough. I had about 15 months where I had Tysabri every four weeks. During the following year, I had to go to four and a half weeks between infusions on four different occasions. I think it made a big difference to how effective the drug was. For the whole of the last year I have had it every four weeks and now I’m starting to see improvements in my walking, stamina and balance.

Maybe the bigger than recommended gaps didn’t make a difference (and they weren’t under my control anyway) but I still wish I had been able to have Tysabri every four weeks for the whole time I have been on it.

I tested positive for the JC virus for the first time about 6 months ago but I have a low viral load and the doctors aren’t concerned about it.

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Oops don’t know why that is anonymous!

Ssdd

Hi,

I’m on my 7th year on Tysabri i’m JC positive but thats something I don’t even think about the huge benefits far out weigh the risks I’ve not had a relapse since I started before that it was every 4 or 5 weeks I never had any remittance till I started tysabri I was even in a wheelchair for over a year but 3 months after starting Tysabri I very rarely needed it.

The only regret I have is not starting it sooner I know I’d still be doing the job I loved and dream’t of doing since I was a little boy but Tysabri wasn’t available when I was diagnosed and when I did get to hear about it I had to fight to get it.

People just don’t know how lucky they are to get offered Tysabri I know they think there not to bad and don’t need it I’d probably be the same if I was told I need Tysabri now and I count myself lucky that I’ve seen and felt how bad MS can be and even luckier that Tysabri has helped me so much.

Mark.