Tysabri....CSF Fluid leak?? advice please

Everyday living
1

Hi everyone,

I hope you are all well.

Im hoping to pick your brains on some advice if I may. I am on Tysabri and had my 19th infusion following missing one month due to precaution which turned out to be nothing, however this meant it was my first infusion for 8 weeks last wednesday.

The past few days I have had a really bad muzzy head and noticed what I thought was my nose running a bit.

However, it is still happening and the substance that is coming out is clear and ‘feels’ like water not what you would expect from a runny nose.

It is worse when I put my head down. I have had no bangs or knocks to the head. However, i have heard there is a link between Tysabri and CSF leak due to pressure build up.

However, Nurse is on annual leave and dont want to go to the GP ifim over reacting.

Any advice?

Thanks

2

Don’t hang about get down A+E or phone 0845 4647

NHS direct.

3

Totally agree with George on this one. A&E NOW.

Liz

4

Yes I agree with George and Liz, I’m not saying this to worry you because I hav no idea but I think you need a medical opinion. Cheryl:-)

5

What is the outcome,are you ok???

Pip

6

Has anyone heard from Muddyfox, since this very worrying post? Taz

7

No but I have pmd

Pip