I got jc tested and came back negative so no holding back i have my appointment for tuesday but still a little apprehensive… any ideas what to expect from the time im there?? Thanks

Hi Nothing to it , you’ll turn up , be given a chair or seat have your blood pressure and temp taken, cannula inserted tysabri infusion for 1 hour, which you won’t feel a thing… Then when finished sit there for another hour while they just keep an eye on you, tea & biccys if your lucky… Then home you go. Everyone is apprehensive first time but there is nothing to it,and it is all a bit of an anti climax. If you use Facebook have a look at the group Tyasbri Uk , great group to be in . Good luck Gray

Hi Martin - good news on your JC test!

From what I can gather all hospitals do it differently, I got to Southampton. Mine is as Gray says above with an added urine test before you start (they just check you dont have an infection) after the 1 hour tysabri drip I then have a 30 minute saline flush (I think they do this to get all the tysabri out of the line and into your body. For my first few infusions the saline drip was over an hour, then they work you down for 30 mins. After that you have temp, blood pressure and pulse tested again then you are free to go.

Hopefully yours will go smoothly and you will wonder why you were nervous!

Good Luck - going on Tysabri was the best thing that has happened treatment wise for me.


I have a bit more negative stuff to say than the others (but not very negative). I find that I feel pretty washed out - tired, walking worse, bladder control worse - on the day of the infusion and for about four days afterwards. After that I feel better.

Also, I’ve had to delay the infusion because it clashed with holidays a couple of times and that has been a really bad experience - last time (in February) I was doing quite well and then my walking and bladder control got a lot worse two days after I should have had the infusion. We were away for a week (half-term) and so that week was bad and then the four days after the infusion were bad.

I don’t know if anyone has told you this (they should have) but if you stop having Tysabri, you are likely to get ‘rebound relapses’ and end up in a bad way, unless you get a chance to go on Gilenya. I think Tysabri is worth it but you should be aware that you may end up positive for the JC virus and if you decide to go off Tysabri at that point, nasty things may happen. I’m negative for the JC virus presently but I will carry on with Tysabri if (when?) my test comes back positive.

I do think that Tysabri is the best drug for people with MS and I feel really lucky to be on it. But I think it’s better to go on it with your eyes open. Sorry if this is a downer.

Make sure you’re well hydrated before you go, makes putting the cannula in easier. At the QE in Brum we have to do MRSA swabs and a urine test before the infusion, blood pressure and temp then a quick chat with the doctor - tysabri for 1 hour, saline for another hour then you can go home armed with swabs and specimen pot to use at home and take along to your next infusion.

You will get to know the other people on tysabri as you see the same group each time you go.

A book, crossword or magazine is a good idea as time can drag.

I only good things to say about tysabri. I have my infusions at Southampton where the staff are great and always available to put your mind at rest if you are anxious about anything.

Being anxious about your first infusion is natural but get the first one over and you will be fine. I do always feel washed out straight after the infusion but nothing a good nights sleep doesnt fix.

Don’t know if this is relating to having an infusion but I turned up for my last infusion with terrible trigeminal neuralgia (I had been suffering 10 days prior), had attack after attack during the infusion. Went home and slept soundly from 5pm to 7am and miraculously awoke with no pain. I am still suffering with TN but the attacks are definately fewer and less severe. I can only put the pain relief down to tysabri :slight_smile:

Thanks guys :slight_smile: just hope im fine with it & dont have anti-bodies that reject the medication now :slight_smile:

Hi Martin,

I’m sure you will be fine. It is always the unknown that makes us anxious.

I am on my 9th infusion on Tuesday and the more I have then the less effects I have. I also felt completely drained after and had a headache for a couple of days too but nothing painkillers couldn’t cure.

I however found out after my first infusion that I am JC Positive. I was a bit doubtful of whether to carry on, but having spoken to my MS nurse the chances of it turning into PML in the first 12 months are very very slim. When asked what would happen if I got it, I was told not to worry because if caught early (which hopefully it will) I would just need to go as an inpatient for a week and have my blood washed through. That sounds worse than it is, all it would mean is having a drip in over a week to clear it out

On a personal note Tysabri was my only option. I had a horrendous relapse April 2013 which completely floored me literally. I couldn’t walk or drive and evidently barely made it to the loo on time so going on Tysabri was my angel in disguise.

Good luck, try not to stress over it.

Sandra x

I got dx in 2007 and had enough relapses to last a life time but i got put on copaxone and it seemed to work for me (for 12months) then i started to relapse more often on it i had 3 in 11 months and the doctors put it down as medical failure and my head neuro dr rog at salford hospital insisted u gave tysabri a looking as my ms isnt getting any easier its only getting worse. They then re diagnosed me with serverely active relapsing remitting ms so i decided to go for it as im jc negative and hope this really works for me i had two bad relapses 4 months ago i relapsed twice within the space of 2 weeks loosing movement to both legs both arms. Dizzyness & still dealing with fatigue. Ive been claiming e.s.a since my last relapse but had a Atos appointment medical to decide if i was well enough to work… spoke to my town mp and he wasnt happy the slightest as atos refused me a home visit so he raised the complaint in parliment and i have the wellfare rights str8 on the phone to me bricking thereself and got signed off onto the support group with no assesment needed and the mp told d.w.p to dismiss any assesment for me so hopefully if luck does come in threes i cant wait to get the ball rolling. Thanks for usefull info guys

Hi Martin,

Small world, I go to Salford Royal too. I’m there tomorrow for infusion. My consultant is Dr. Taylor. Letters kept being sent to Dr. Rog but he for whatever reason didn’t see me, but when I got referred to Dr. Taylor he also said what Dr. Rog said to you about severely active RR so hence where I am now.

Take care x

It’s OK. The nurses and the medication do the clever stuff; I just sit there and try to look intelligent. I have been on Tysabri for 3 years now, and it has been a blessing. I hope that it suits you too.