Last reply 9 months ago
decisions, decisions…


I was diagnosed with RRMS in March 2019. Since I have had two relapses (December 18) and (March 19) I have been told that I am starting DMTs in May.

The Hospital phoned me yesterday advising that the EMA had restricted use of Lemtrada whilst they review potential new side effects.

I was scheduled to start Lemtrada infusions on the 13th May, but the hospital now said that it MAY be Ocrelizumab.

Hospital want to see me tomorrow to discuss treatment options but this has completely thrown me.

I am struggling with fatigue, working full time and the commute into London.


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9 months ago

@ohtoots , You’ve been on a bit of a whirlwind, from initial relapse to starting treatment in six months.

I don’t envy your daily commute. I did it for 20 odd years, first from East London and for the last 12 years, from the South Coast. So, I know what you have to endure and how oppressive London can be in Summer.

As for Ocrevus, select the Ocrevus “tag” that has been added automatically to the foot of you post above, to access previous Forum activity regarding this treatment.

9 months ago

@ohtoots – If they were going to give you Lemtrada then the only broadly similar drug to that is Ocrelizumab. (I take it) The NICE guidelines indicate Ocrelizumab where Lemtrada is considered unsuitable.

The EMA advisory warning on Alemtuzumab (Lemtrada) is just that, an advisory. It is not a ban. Perhaps they just want to reassess you for Alemtuzumab? It is a possibility.

I know what you mean about fatigue, commuting etc. It sucks.

Why do you feel thrown and may I ask which hospital is it?



9 months ago

@stumbler, thank you. Epping to Canary Wharf isn’t that bad, but it’s the heat of the central line in the summer that is a killer.

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