After a long time battling to go on Tysibri I had mny first infusion on Tuesday.
That went OK except for the effect of the steroids that my Neuro insists that all new Tysibri patients have for the first 3 infusions. (This seems to be a particular quirk of hers that the other neurologist I saw, the nursing staff and my MS nurse all think is a bit “individual”)
The problem is I honestly think that I have been going into a relapse or could it be some sort of adverse effect of the medication?
Tuesday and Wednesday I couldn’t sleep although I was very tired - I was like a walking zombie. I think that this could have been becasue of the steroids though.
Worse though, since Wednesday my balance has gone completely to ****, I have been dropping things because I have very numb hands and, even though I am now sleeping (A LOT!!!) I have appaling fatigue. Far, far worse than I have ever had before.
These side-efects don’t seem to match those warned about in the drug information I have been given and, as these have now been happening for 5 days+ I am beginning to worry that my timing has been its usual fantastic self and I have gone into a relapse.
Any Tysibri afficionados have any ideas / similar experiences thsat they can share before I ring my MS nurse tomorrow. I don’t want to waste her time if it is normal but on the other hand …