Hi

Everyday living
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Hi everyone Has anyone been on lemtrada treatment? I was wondering how anyone, got in with this treatment. Or any thoughts about it. Any feedback would be greatly appreciated lina x P.s hope all had a good day x

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there is a lady on here called Katy1979 who is doing really well on it.

keep an eye out for her posts.

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Hi Lina

Carole is right, Katy79 is definitely worth looking out for. If you were to do a search (there’s a ‘search’ box on this and each of the message boards) for Lemtrada, there are many posts from different users.

Also, there is a website/forum called Shift MS, there are a lot of lemtrada users on there. It’s definitely worth a read: https://shift.ms/popular-topics

Sue

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thanks sue,

don’t know why i put 1978 instead of 78.

duh!

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neither do i know why i knocked a year off her age!

katy79!!!

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I think you’ve finally gone bananas, you added a year on rather than taking it off. If I were Katy79 I’d stop bigging you up!!

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Hello! Just skimming the forum on my way into work and this made me chuckle! 79 please - otherwise you’ll turn me 40 this year and I’m not emotionally prepared for that! Lina - I’m exactly a year post R2 lemtrada and it’s worked well for me so far. I didn’t have any real issues with the infusions, recovered quickly and without picking up infections whilst my immune system was down and, so far, my monthly bloods are all good (although I still have a further two years of monitoring before I know whether I’ve picked up a secondary autoimmune condition). Importantly, MS is a delightfully silent bed fellow and I’ve had no new lesions and my MRIs have stopped lighting up like Christmas trees (no new lesions, no active lesions and signs that old lesions are less pronounced). Very happy to help if you have specific questions. If you want a broader spectrum of feedback, good and bad, Shift or the Facebook group Lemtrada (Alemtuzumab) for treatment of MS in the U.K. are good sources of anecdotal experiences (including those from whichever treatment centre you are under as they all have slightly different protocols). K xx

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