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’!
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.
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.