tysabri

Everyday living
1

Help, I need users advice/experience with tysabri my 27yr old son is to be started on it have extensively researched it but found little about user’s experience.

thanks

2

Hiya!

I had my very first infusion today and it was not bad at all, the drip is done for an hour and then you need to stay in an hour extra to make sure no bad side effects come out.

I hope it all goes well for your son too x

3

thanks for replying so quickly where did you have it done? do they infuse it into your arm?

4

Hi

As Moogle star said, the infusion takes an hour, then there’s a further hour of observations. When you arrive they take a urine sample to make sure you’ve not got an infection. Then a canula gets put into your arm which the drip is attached to (drinking lots of water beforehand is meant to help with putting in the canula). Every half an hour the nurses will do my observations (blood pressure, pulse & temperature). Once the Tysabri has gone through, they’ll probably hook up a saline drip to help flush the drugs through, which probably takes about 20 minutes or so.

Chances are there’ll be a few other people there having it done at the same time. As you have it every 4 weeks, you’ll be with the same group of people so you begin to build up a relationship with them & have a laugh. I also take a good book with me though, to help pass the time. The rest of the day I’ll be pretty shattered, so I take the day off work. I’ll begin to pick up over the next couple of days though. Something I’ve noticed as well is that in the week before i’m due my next dose my energy levels are a bit lower than normal.

I’ve been on it over 2 years now & have gotten on really well with it. I used to have a lot of relapses but things have been very steady since I’ve been on it.

I hope your son gets on well with it.

Dan

5

Now I’m a little worried as they said they didn’t want a urine sample off me but took one off everyone else in the room :frowning: I had it done in hospital and it was in the vein in the arm.

6

Hi I’ll be on Tysabri 5 years now this August its been great for me I had aggressive RRMS relapsing every 4 or 5 weeks before I started Tysabri every relapse just got worse and I never recovered fully form them I ended up in a wheelchair with just the use of my upper left side but now I’m as close to normal as I’ve ever been I’ve never relapsed since I started Tysabri that alone would be amazing for me but I’m walking and feeling and doing great going to the gym lost loads of weight and got really fit and healthy.

The drug itself involves getting an infusion in hospital every 4 weeks it takes an hour for the infusion then a 20 minute flush so you get every last drop of the Tysabri and after another 40 minutes your free to leave they really keep a close eye on you while your on this drug blood tests and urine tests nothing is left to chance.

There’s a great Facebook group called UK Tysabri users (Natalizumab)

Its a closet group no one only members can see what you post there’s over 300 of us in the group its for people in the UK and Ireland you’ll get all the help advice and support you’ll need and it really is a fun group of people

Mark x

7

Thanks everyone for your posts. They have been very informative. Mark I will look at the tysabri Facebook page as suggested.

Bernie.