Last reply 1 year ago
Lemtrada – just take it twice?

Ive been trawling for the answer to this but can’t find it. Is the theory with Lemtrada that people just have 2, maybe 3, treatments and then MS is controlled for life?

Ive been pouring over comparisons between Lemtrada and Tecfidera and it seems Lemtrada is 2 treatments but Tecfidera is treatment for life.

How would you know if you need another Lemtrada treatment? Would you need to suffer a relapse or would activity on an MRI lead doctors to recommend more treatment?

Sorry for all the questions! Thanks

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1 year ago

I was on tec, then a MRI scan showed ms was active still so Neuro suggested I step it up. Was offered 3 alternative drugs.
I wanna start a family soon so lemtrada was the only option. Anyway- was scary in run up but love not having to take tec, was tricky finding protein for every meal lol. The lemtrada has really made a difference already to brain power and balance is a little better

1 year ago

Oh and yes, I usually twice in first round unless the ms doesn’t calm down (v rare for another round)

1 year ago

I just finished round 2 yesterday and I believe the stats the nurse gave me were that 80% of people were done after round 2 of Lemtrada for quite a long time. I think assuming we will never need any other form of treatment for life may be a bit of a stretch, particularly for those of us having the treatment in our 20’s.

That being said whilst I was in there they had just given a lady her third dose because she had relapsed twice both after the first and second dose.

My neurologist has said I will be monitored based on my MRI’s and symptoms and if need be another round may be suggested. He’s even advised if my fatigue doesn’t settle within the year another dose may be advisable.

I think the nurse also mentioned there have been a few cases where people have received as many as 4 and 5 rounds but this is quite uncommon.

1 year ago

@kattyazz and @ashory thanks for replying. That is so so helpful. I really appreciate it

1 year ago

I think the theory is that it’s for life but they really only have data up to 6 years or something. I did Round 1 nearly a month ago, now.

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