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Lemtrada

Hello everyone I currently take Tecfidera, which is ok, but I have been offered Lemtrada and initially I said no because of the risks. I saw a friend yesterday who has had it and it has really helped him. Loads of his symptoms have cleared up and he is better than he has been in ages. He was relapsing about once a month and hadn’t had once since the first infusions 4 months ago. What are your experiences of it? Have you taken it? How long ago and how have you felt since? Thank you everyone

Hi tingly_badger, I am due to start Lemtrada a week on Monday so happy to let you know how I get on? There are some good threads already on here that tell you about other experiences. p.s. love the name! :slight_smile:

Have read about the possible side effects of this drug, and I think, I’m not going to try it for another two or three years for sure. Yes - i’m in wheelchair, yes - I feel strong paralysis, so what? At least i’m not “dead”.

This is not the most helpful choice of words in response to someone who is about to start this treatment.

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I’ve had it and I’m due my 2nd round in May.

In short its been fine. The procedure was fine I’ve felt fine. From my own reading it does seem to be the earlier you are in the disease the course the better in terms of avoiding some of the associated post fatigue etc. If you’re not in good shape to start with it does seem to knock some people around at first.

I was blighted with UTI’s for a few months after but other than that had no problems.

I do think when considering any DMT and the risks, you need to balance them against the “side effects” of MS. For me the risk of progressive MS is more of a concern than any risk associated with a DMT.

If I were in the early years of my MS diagnosis, and fit the criteria for Lemtrada, I’d take it like a shot. Yes, there are risks, but life is a risk. And from my current position - 19 years in and very disabled, even though I’m still RR - it seems that the best drug, which offers the best possibility of not becoming this disabled, is the one to take if offered.

Sue