Hi all. I was injecting Avonex for a few weeks but told to discontinue due to severe depression. My MS nurse advised that I should switch to Capaxone and that she would arrange delivery and a training appointment for me. It was my bad luck to have quite a severe relapse before starting the new meds. I have now had a letter advising that my neuro is recommending Tysabri. I’ve read all the literature they sent me, but would appreciate hearing first hand experiences from those of you who have been on this drug. Thank you 
Kaz xxx
Someone I met at a self management course, become good friends via social networking started on this last july same time I started copaxone she has been positive about the infusions and hasn’t had any relapses. Take care Barney
Thanks Barney. It does seem to be a very effective treatment. My biggest worry is having to make the decision whether to start Tysabri if I get a positive JC test. Kaz xcx
Hi Kaz
It is really daunting at first. I have been on Tysabri for just over 2 years now (rebif before that). I found out I was JC positive on my third treatment. My relapse rate, and severity of relapses made going on to tysabri an easy decision for me - I wanted to try and hit this with the most agressive treatment I could. Alot of people I know on Tysabri are JC+, as a lot of people will say “the benefits of tysabri way out weigh the risks of PML” and I totally agree with that. Of course it doesnt work for everyone.
Being JC+ I am closly monitored with 6 monthly MRIs and the nurses that administer the infusions are always the same ones so they know you well enough to pick up on anything odd.
At first I didnt think Tysabri was working for me - in fact I felt it was making me ill. For a few days afterwards I would feel very tired, have a headache etc. But that eased after about 7/8 rounds of treatment and now I feel great - better than I have in a long time.
There is a really good facebook group called "UK Tysabri users (Natalizumab) - come join in, there are plenty more far more experienced than me on there.
If you want you can PM me - I can only offer personal experience. Where would you get tysabri - I get mine in Southampton.
Hxx
Yes, please do - there are lots of people on there who are wondering whether they should start.
Alison
Thank you so much. That’s very helpful. Because my deterioration has been quite rapid over the last year, my partner feels very strongly that I should accept the treatment, but of course says it has to be my decision. Having kids, including a three year old, it seems totally against the grain to do anything that could threaten my life. But I do understand that the odds are in my favour. And of course I haven’t even had my JC test yet Close monitoring would certainly help to put my mind at rest. I’ll go and find that Facebook page Thank you!! Kaz xxxx
I’m having my second infusion this week, like you my ms seems very aggressive only appeared last April but wow it hit hard, I decided and pushed to start tysabri as my first treatment to hit it hard,negative or positive I didn’t care,luckily was negative,as the others have said join the Facebook group great bunch . Take care Gray x
The trouble is that there are no risk-free options. The risk of poorly-controlled, aggressive MS wreaking havoc is not optional - I certainly don’t remember MS politely asking me for permission - so choice comes down to DMD yes/no and, if yes, which one. Some choice!
MS had been taking such lumps out of me that the decision to accept Tysabri was pretty easy. I had had MS for years - most of them well-controlled with Avonex, until my MS turned really nasty - and I would have done anything to stop the rot: I was accumulating so much damage and knew what MS could do.
But your partner is absolutely right - it is a decision that only you can make, and it is vital that you feel happy with whatever you decide.
Alison
I’ve been on Tysabri for almost 5 years. It has been very positive for me, completely halted the relapses and I feel well pretty much all the time. I tested positive for the JC virus but don’t give it a second thought to be honest. No treatment is without risk unfortunately. Good luck with it if you decide to go ahead.
Hi Hayley I’m also getting my Tysabri infusions at Southampton in Victoria house I’m due my 5th next month.