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Tysabri

So today I got the call from Ms nurse to say my blood results were back and that I could go for my 1st infusion of Tysabri next Friday . Only 1 problem my results showed I had the anti body in my blood that can cause problems on the medication. Has any 1 else had this problem? Also will the medication also help my fatigue and aching legs and arms ?

Hi,

Is the anti body are you referring to the JC virus?

I’m on Tysabri, I have only had 4 infusions, due my fifth soon, and my JC virus status is strongly positive. My hospital explained and also gave me leaflets on the drug and the JC virus. Even if you are positive you can have this drug for at least a year, they keep a check on you, so you should not worry too much about it for now. The nurses, when you go for your infusion. have a list of questions they ask you every time you go in.

I can’t help with the other questions, fatigue and aching limbs yet, unfortunately, have had 2 infections (ear and chest) and the horrible cough/cold virus that has been doing the rounds, followed by post viral tiredness. Everyone I have spoken too (other patients) sing the praises of this drug. Its still a bit early for me to know, hopefully I will feel the effects soon.

There is a face book page which you can join (closed group) - UK Tysabri users (Natalizumab) - which will be a help to you.

Good luck

Cherry x

Hi cherry

yeah it’s the JC virus . And thank u for the group on facebook ive asked to join it x

Hi

I think all the hospitals are different in regards to how long they allow you to continue with Tysabri if JC+. I know some people (you will meet them on the fb page) that have been on Tysabri for 5+ years and are JC+.

It effects everyone differently, but for me it did help with my fatigue levels and some of the MSey aches and pains and I also know it does for others too. But the nurses and Drs always say that it wont help with anything you already have symptom wise.

Good luck it was a great drug and worked wonders for me and I hope it does for you too.