Soon to start Lemtrada and I'm scared!!! Feel me with positivity if you can... :)

Hello all!

So this if my first Forum (ever) as I’m looking for some support. From what I have seen you all support each other so well so at times of worry I thought I’d give it a go!

My name is Sarah, I’m 25, and have suffered with RRMS since I was 17.

Over the years I’ve tried Beteferon (I bruised every time and I hated injections) Tecfidera (I had all the side effects) and I relapse on both. So as the optic neuritis in my left eye has never recovered, the consultant decided to take my case even more seriously and offered me the Lemtrada treatment.

Im scared how I will respond. I have got age on my side. Im just nervous…

Im not sure how I will feel during the 5 days and how long recovery is… as ever, it’s all so unpredictable!!!

If you have had positive results or know of people that have, please share!

Thanks in advance for the support!


Hi Sarah

I’m sorry, I have no experience to offer you. But will be hoping all goes well. Meanwhile, do a search through for posts by Katy79. She’s close to her second round of Lem and is brilliant at writing about her experience.


Hi Sarah

noticed you’d posted twice and didn’t know which to reply to!

I’m due to start round 1 on 7th Aug, so a week ahead of you. I’ll let you know how it goes :slight_smile:

I’m apprehensive, but I’m sure I’m making the right decision. Hope so anyway. The possible alternative is more daunting.

I’ve been on Plegridy for the last 17 months, which I got on well with, but it seems my MS is active enough for Lemtrada so will give that a go.

I’m having my 5 days treatment as a day patient so travelling in and home every day. To me that’s the worst part. I’d much rather be admitted but that’s not offered at my hospital.

I’m just off to attend my consent appointment and ask about anything I’m still unsure about, also I’ve agreed to take part in the study they’re doing looking at the long term effects of the treatment, so I’m seeing some about that too.

Hope it all goes well for us both,


I would recommend joining this Facebook group - much positivity :slight_smile:

Lemtrada (Alemtuzumab / Campath) UK & Ireland

Best wishes to you