I am starting tysabri next week and have heard a lot of good things about it, anyone got any good advice? Was diagnosed in June and just glad to be starting dmd’s at long last!
I’ve been on it 12 months and it’s been great. No relapses during that time and my latest appointment with the neuro said my symptoms had significantly improved, mostly sensory symptoms but I don’t notice them much any more. The first few infusions left me feeling tired and headachey so drink plenty of fluids and take some paracetamol. Had my 12th infusion this week and have felt pretty rough since but think I may have picked up a bug or something. Generally though it’s been brilliant and got me back leading a normal life. Good luck!
Thankyou. X
Hey
I have been on Tysabri for over 4 years now. Since I have been on it I have had no relapses although my mobility worsened considerably due to the stress of it taking 6 months to sort out my DLA claim. Before that I was relapsing 3.5 times a year on both Betaferon and Rebif respectively.
They will tell you about a very rare brain infection called pgrossive mutlifocal leukoencephalopathy (PML) that can be fatal. It can only occur IF you are JC virus positive. The risks of getting it 1 in 256 or 0.4%. In my mind those are such long odds that I ain’t even fussed about the risk of PML as I positive as the bebefits hugely outweigh the risks. DUe to this I have been to see me bro out DOwn Under, studying towards starting a p/t degreec course and I play wheelchair basketball (dont suffer with the lassitude fatigue), non of this would be possible without the Tysabri.
Andy
Cheers Andy I do know about pml they have filled me in on everything, luckily was checked and am negative to the jvc virus luckily so looking at all comments I do think this will be right way to go. If you don’t mind me asking is your wheel chair because of ms? If so which one do you have? Jakki