So, I’m on the verge of starting on Tecfidera, but only as an interim treatment before I’m given Lemtrada. I started on Tysabri in April last year, but I relapsed in August (previous relapse had been March) then again at the beginning of January this year, so it’s all change for me now. Initially I was going to get the Lemtrada on the week beginning April 20th as there’s a 3 month flush out period after the last Tysabri infusion. But I asked for a postponement as I was ill at the time. The MS was happy to comply as she was still waiting on info from other people about the treatment.
I’m the first person in the area to be given Lemtrada, so they basically have no idea what they’re doing, bless 'em. I’ll be getting the infusions as an outpatient which I’m a little nervous about, I’m staying with my mum for the 5 days as the MS nurse says I must have someone with me, but the thought of the journeys to and from the hospital each day don’t exactly fill me with joy. It’s only another 15 minutes or so further from my mum’s, so 45 mins on a clear road (lol…it’ll take way over an hour, definitely), but I suffer from motion sickness, and if I’m likely to be feeling ill will flu-like symptoms before I even get in the car…urgh.
This is all nerves, I know. I might be lucky and have only the most minor of side-effects, and not need my mum to bully me into crawling out of bed each morning because I just want to stay there and feel massively sorry for myself. But I’d love it if other people can share their experiences with me so that I’m less in the dark.
Same with the Tecfidera. The MS nurse wants me on this because she doesn’t like me going for an extended period with no protection. I did question that, because if the Tysabri wasn’t working then surely I never have been protected, right? But she said it wasn’t exactly not working; and as I’ve relapsed again, just 3 and a half months since the last one, since the infusions were stopped, I now see what she meant! So I’m cool with going on the Tecfidera until they’ve got themselves sorted out and know exactly what they’re doing with the Lemtrada. But again I’d love some first hand info. =3