Tysabri

Everyday living
1

Hi Everyone

im starting on Tysabri next week. Does anyone have any experience with it? Is there anything that’s worth knowing before I start?

Thanks all

Natalie Xx

2

Good luck Natalie. Tysabri was a wonder drug for me. Where will you go for treatment? Worth drinking plenty of water on the day, you will obviously be hooked up to a drip, but if you need the loo they will just disconnect you for a minute. I was in a room with other people having infusions so you have people to chat to.

I felt quite washed out (headachey, stiff etc) after the first couple - but i think that was sitting down for too long and being in a stuffy room. At first they took quite a while, about 3 hours once your hooked up but in the end the get quicker. They monitor you for longer and give you a saline flush over a longer period of time to start with.

Good luck

3

Thanks Hayley, that’s so positive to read. I’m going to Stoke for the infusion. I’m actually pretty excited about doing something so your words are reassuring that I’m doing the right thing.

Nat Xx

1 Like
4

Obvs everyone is different, but everyone I personally know did/do really well on it. And - it is nice to see your MS nurse once a month. To be honest it turned into a bit of a social event as well - nice coffees and cake! I was sorry to give it up.

5

Hi Natalie

I’ve been on tysabri for a year now. In the year before I started tysabri I had 5 relapses, since being on it I have only had one.

The infusion is a simple procedure and apart from feeling tired for 24 hours I’ve had no issues. I’m JC positive and I have to be careful with tysabri but I am well looked after.

The only thing I decided to have was a portacath fitted in my chest. It saves being injected in the arm every month and was so easy to have fitted. Well worth the day surgery.

I wish you all the best and am sure you will have no problems with this DMT xx

6

Thanks so much for your words of wisdom. Hope the treatment continues to treat you well Xx

7

Hi. I am due to start Tysabri soon and I must say I am so nervous. Is there anything I need to be aware of? Thanks in advance. Denise