Forum

Lemtrada

Hi, I’ve just noticed that lemtrada has been approved for use in Scotland for people who have active rrms. What would be the definition of active? Thanks A M

occording to this site “‘Active’ is usually defined as two relapses in the previous two years.”

would have to seriously think about this if i was offered it, way the pros and cons out

I was seriously considering it. But seeing my MS is mild so far, i chose tecfidera. First dose due soon…

A little while ago I was told by my ms nurse this drug would be costing over £50.000 per person. Possibly up to £56.000.

I don’t think they will be handing it out easily. Your ms attacks would have to be quite frequent and severe. The side effects have to be weighed up as well as faula already mentioned.

Teresa.x

I’ve had four relapses in the last year but l’ve just been turned down for Lemtrada (and Tysabri) as my MRI scan shows no new activity (and no change since the one the year before) and my relapses aren’t considered “clinically significant” - I definitely got the impression this mean vision and/or mobility problems, neither of which I’ve had. This was from a neurologist I was referred to at Addenbrookes.

Yes, I definitely dont think I’ll be considered for this either. Looking to start dmd’s and am seeing the Neuro in September to discuss it and want to go in having a good idea of what I wasn’t. I really like the sound of lemtrada but don’t think my ms will be deemed active enough. So it looks like I’ll be choosing between the dreaded injectables or aubagio. And that’s if my neuro agrees to Aubagio as he seems to very keen on Extavia for some reason. A M

BG12 (Tecfidera) tablets hopefully will be available in England soon. It’s available now to Scottish patients. The decision is to be made in August (next month, not that long to wait) and availablity to patients should be in September. It’s a first line treatment and seems to have less side effects. Most recent clinical trial (phase III DEFINE) annual relapse rate reduced was around 50% compared to placebo. Reduced risk of disability progression around 34-38%. MRI scans after two years of patients taking BG12 showed fewer brain lesions compared to placebo.

Aubagio comes with possible side effects, hair loss and possible liver concerns. Also if you are female and of child bearing age Aubagio takes two years to get out a persons system before its safe to become pregnant.

I’m definitely interested in Tecfidera. I spoke to my MS nurse last week who confirmed she had a meeting with a rep from the drug company a couple of weeks ago and they are very confident it will be approved by NICE but my hospital (Ipswich) won’t have it until December. The crucial thing for me about it is that it works in a completely different way to Gilenya which I hated and that’s what rules out Aubagio for me. I’m currently not on a DMD after a very torrid time on Gilenya but going back onto Rebif hoping that it may work again after taking a break from it but if it doesn’t, it will be Tecfidera for me.

I wasn’t aware that tecfidera was available as a first line treatment in Scotland. I’ll look into it too. I would rather avoid the injectables if I can. A M