So two days after my last infusion (#3) I got what I thought was heat rash. Then a day or two later I got what I thought was the MS hug. This infusion was given with cover, as were my first two. As the weeks went on my heat rash changed into what looked like eczema and the hug pain got worse too. Fast forward to this Monday. I got my 4th infusion, this one was my first without the cover (piriton and steroid) before it. All went fine until yesterday, two days post infusion. I woke to an allergic reaction rash all over my arms and neck. Realised the pain in my chest was back too. It was only then the penny dropped about the previous month. I decided to go straight to casualty and on my journey my arms just got worse. Long story short I have reacted to the tysabri with the skin rash and pleurisy. I am home now with piriton, ibuprofen and a course of steroids. So my worry is, will they stop the tysabri? I had just started to feel better. Got so excited last week that things were going to be so good. I know some people get the cover with every infusion bit the fact that I reacted last month shows it didn’t work completely plus with it involving pleurisy would they rush it? I know there are other options but my neuro has said in the past that tysabri was the only drug strong enough for me. Anyone had anything similar? Thanks
when is your next infusion?
the doctors at the place where you have the infusions would be the best people to ask but may not be practical.
ring your ms nurse.
do you have a number for a tysabri support line?
copaxone has one and i think rebif does too.
good luck and i hope you can continue with it.