Forum

Lemtrada

Hello.I understand Lemtrada DMT has been approved now and we can ask for it. Although it may take until this Sept to actually begin treatment.

Has anyone already taken this and if so how has it been? Also is Lemtrada administered with steroids at the same time? I read this may be the case somewhere.

Yes, it now has approval from NICE. No prescribing criteria yet to my knowledge other than it’s for active RR. I know someone who did the trial. She’s had no relapses since her first lot in December 2009. She was previously relapsing every three months. I have an appointment next month at Addenbrookes next month and I’m going to be asking for it. I’ve had five relapses in the last eighteen months and I’m currently not on a DMD after ten years of being on Rebif (for nine) and Gilenya (for one) I’m struggling badly but I’m prepared to wait as I firmly believe it can be the game changer I so desperately need. Interestingly, when the lady I know did the trial, it was £1,100 plus inpatient costs per infusion - apparently it’s now £56,000 per infusion! I’m gobsmacked it was agreed by NICE so quickly but I’m guessing it’s results have been so good, they figure it will save money in the long run.

Yes that is quite a price. My MS has been active and my left leg is deteriorating.

Yep, same here except my MRI scan doesn’t actually back up what’s been happening. I had one earlier this year which showed no new activity since being on Gilenya - in reality, I’ve had four relapses since being on it (came off it last month)

I was going to ask for BG-12 but it may take until next year to begin treatment on that, so I shouldn’t wait that long. I have asked my neuro’s secretary for an appointment with him but she hasn’t responded. I emailed her again today.

I think probably at this stage Lemtrada will be the most suitable. My neuro said my MS is very active.