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tysarbri

hiya! has anyone got any thoughts on tysarbri?

im currently on copaxone,but my symptoms r getting worse. ive been relapsing now for a month nxt week,ive been in hospital to have 3 day iv steroids and im on the last week of oral steroids,but they havent touched me this time.

im debating to go for the tysarbri,but have been tested positive for the jc virus and really scared bout it,but ive heard its really good medication and people notice a different after 1st infusion. anyones thoughts would b great at the mo. thanks ceri

I haven’t heard that people notice a difference so quickly - I thought the norm was about six months. However, Tysabri is the best thing out there at the moment. Whether or not it is right for you is an entirely personal choice though. I believe that the odds of PML if you are JC virus positive and have had steroids at some point are somewhere in the region of 1%, once you’ve been on it 2 years. However, I also believe that most hospitals in the UK monitor Tysabri patients very carefully and have a very good PML record. (I don’t know this from personal experience though as I am not on Tysabri myself.) Ultimately, only you can determine if it is a risk worth taking though. What does your neuro think? There are other DMDs likely to be approved this year, but apart from maybe Alemtuzumab (aka Campath), they don’t have trial data as impressive as Tysabri’s. The potential side effects aren’t generally as scary though I guess. It’s a very very difficult choice :frowning: A very wise person once told me that ultimately the decision to go on Tysabri was easy because the reality of her MS was much scarier than the very small possibility of PML. I’m not sure I would have made the same decision, but then my MS is much milder. I recommend posting this on the Everyday Living forum - there are more people on that forum who are on Tysabri and who may have been in a similar situation to you. Good luck with the decision. I hope that whatever you choose works out really well for you. Karen x

I started Tysabri in February and I have noticed a small but subtle improvement …may be going on to the pill, as I had a lot of hormonal issues every month. I tested JCV positive …and this is my first treat ment to date…diagnosed a year ago. I’ve had 3 relapses in 11 months and the last one was by far the worst and thought it was never going to end. I’d pretty much made my mind up that I would give it a go no matter what the results of my test were going to be…it is the best around at the moment. My written treatment plan predicts an 81% improvement in my relapse rate. Talking to others in the room when on my first infusion only one of them was negative. I was given a great pack from my MS team which included a DVD of patients stories. For me I feel so positive at the moment I think it’s because I feel like I’m doing something to fight this. Good Luck with your decision…x Libby