Forum

Tysabri

I am due to start this soon. Has anyone found it helpful?

Hey Lucy

I have been on TYsabri for over 2 years and can say that is the best thing that I have ever done. I have tried both Betaferon and Rebif respectively and whilst they helped with the severity but not the rate of relapse. I was averaging 3 relapses a year before I started Tysabri and I have had none since.

it has completely stabilised the MS though it hasn’t helped so much with the symptoms. I completed an Acees to Health Studies in the summer with a view to doing a part time Occupational Therapy degree course at my local university. None of this or the options that I am considering would have been possible withouit Tysabri.

The only thing of note is a potentially lethal side effect called PML. It is a very rare brain infection which is caused by the JC virus. There is now a test available for the JCV and IF you are JCV+ then the chance of developing PML is about 1 in 350 or 0.3%. Me? I ain’t even remotely fussed by the “risk” of PML. Why would I worry about such a miniscule risk compared to the quality of life Tysabri has given me, the benefits far outweigh the risks. I was asked by MS neuro and I had already told the MS Infusion nurses not to waste NHS time and expense having the test done because I ain’t fussed about PML, though I wouldn’t be surprised if they do the test and don’t tell me!

Andy

Hi Lucy,

I’ve found It really helpful

I started it in August 2008

Before I started it I was having a relapse every 4 or 5 weeks things got to a stage where I was having to use a wheelchair with every relapse I seemed to get a bit worse steroids used to bring me out of a relapse to begin with but as time went on all they seemed to do was cause me to gain weight by July 2008 the only part of my body not affected by MS was my upper left side everything else was either weak I had no feeling or control over and the fatigue was a nightmare.

But now I have a life again I haven’t to use a wheelchair I’ve never had a relapse since I started Tysabri I have all my feeling back again I’ve no fatigue and loads of energy I go to the gym now I’ve build up all my strenght and more and lost lots of weight I feel fitter and healthier now then I ever felt.

Getting to where I am wont happen over night and for some they my not get the results I’ve got but just give it time.

I was due my 40th infusion yesterday but I was on holiday in Turkey for 10 days and didn’t get home till this morning I’ll get my 40th infusion now on the 10th November.

If you have anything you’d like to ask just pm me and I’ll be happy to answer you.

Mark x

Hi Lucy,

I had what the docs keep calling “a major relapse” earlier this yr so was started on Tysabri in Aug.

Haven’t experienced any nasty side effects so far. Fingers crossed it helps me as I try to get physio to help me walk again.

Only downside so far is boredom of sitting in hosp waiting for the infusion to be complete. Take a friend or book with you!

Daunting first time I went but am now used to it.

Good luck!

Loopy Lou

Hi,

I’ve been on tysabri now for over 4 years, and I have posted my diary on msrc.co.uk under Tyabri Diaries - Christine. I just wish it had been available 10 years ago. I believe it hs staved off an awful lot. Go for it - and have a look at my diary. It’ll blow you away! good luck

Christine.

Hello, Ive been on tysabri 2 years now and have been well happy with the results… did have a very minor relapse last Xmas but did have other health issues at same time. It didnt last long and left me with no extra problems. Is a very personal choice like all of the MS treatments etc. I have had the recent test for the JC virus and it was positive. This in no way has worried me and I am happy to continue with Tysabri… and take my chances!; for me the results are irrelevant as if I stop tysabri I also take th gamble of MS taking hold… so life a gamble… play on! lol …

Hope your choices for your MS work out well, Best wishes Sarah XX