As a three-time recipient of the MS drug Lemtrada, I was concerned back in April this year when a report came out about it being restricted.
I read into it further and realised my own (possible) courses of this treatment would be secure and I wrote an earlier blog post about this issue.
However, I’m still being contacted by several concerned friends(some of whom have also had Lemtrada) and organisations who referred to the temporary restriction as a ‘ban’. Again, I looked in to this further as the word ‘ban’ was pretty emotive for me, and somewhat frightening.
In short, Lemtrada (also referred to as Alemtuzumab or Campath) is a mono-clonal antibody which can give remission from MS for years. It’s what my neurologist told me back in 2012, when I was first prescribed it off-license, as my MS was rapidly-evolving and highly-active.
I jumped (badly, and with a stumble) at the chance as I could see my future health deteriorating with alarming speed. Having a child starting High School when I was diagnosed, it was imperative that I had a swift, sharp shock when it came to MS.
To date, more than 22,000 patients worldwide have had this treatment for MS. Alasdair Coles, who was closely involved with Lemtrada development said, ‘In treating (MS) I use the strongest drug I can, as early as possible, and I like to use (Lemtrada) … first-line, unless the patient doesn’t want to take the risk.’
Well, that’s me. I took the risk and developed Grave’s Disease as a result. I knew I had a one in three chance, but the alternative was far worse. I would rather be fat and MS-happy than thin and on the floor, the way I was heading. Don’t get me wrong, my weight gets me down (lol) but I can cope with it; MS nearly destroyed me back then.
Lemtrada has been temporarily restricted – it’s not a ‘ban’, it’s a ‘label change’. It is still prescribed, even for new patients, and this is in line with the American prescribing guidelines. The review of Lemtrada will be carried out by the Pharmacovigilance Risk Assessment Committee (PRAC) and will deliver recommendations.
I can only relate my story – I was told Lemtrada could hold back MS and for that reason, I took it. I’m lucky I have access to a fantastic neurologist and am aware that not everyone has this option.
I’m only one of the many human faces of Lemtrada and I dearly wish the medical authorities will listen to us when they decide our fate and those of all the people who are being newly-diagnosed every single day.