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Lemtrada stories

hey everyone

Can’t start tysabri as I came back too high of an antibody so they are keen for me to start Lemtrada. Slightly terrified as it’s a hosp for 5 days (hate staying in hospitals I know it will be worth it for the bigger picture) just wanting to hear others that have been on Lemtrada and how they have gotten on xxx

Hello Zara

I can’t help you out with personal Lemtrada info. But why not have a look at the forum on https://shift.ms/ There are lots of people on that site who’ve had Lemtrada.

To me, Lemtrada seems like an excellent drug. I hope you do well on it.

Sue

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Hi Zara. I’m about 6 months post 2nd lot of Lemtrada. So far I believe it’s been fantastic. It’s been 2 years since my last relapse. The previous few years there had been quite a lot. The 5 days in hospital weren’t too bad, the main side effect for me was head ache on day 2 all day. Drinking the 3 litres of water helped. I did come up in hives, but the nurses were quick to administer iv antihistamine and that worked quickly. Lots of good books all maybe DVD player. It was quite nice handing a bit of time out from the day to day slog. In till a week of work after just cause I was still but head any and foggy. Good luck.

Hi Zara

Following this with interest, I am due round one in about 6 weeks, and go from terrified to anxious, to excited daily! I am going in as a day patient though, so I will get to go home to my bed every night. If youre on FB there is a good Lemtrada page too - not sure if I am allowed to link it on here, but could PM you the name?

Hi

I ve been given the option to be seen as a out patient if am willing to travel as the hosp is 20 odd miles away from me but will have a bed if I change my mind. Was just interested to hear others stories with getting Lemtrada. I get what you mean about the feelings for it it’s a emotional roller coaster. Am getting all my pre treatment tests done next week blood n chest X-ray so hopefully I will get my date for starting soon hopefully 8 weeks or so.