Hi , I wonder if anyone can give me their experience of Lemtrada , I am due to see my consultant this week after having all the blood test, smear etc for consideration of going on this medication.

I live in London ,

Did you have to stay in hospital?

How long was your recovery afterwards e.g how long did you take off work ?

Did you feel that it made a significant improvement to your MS ?

Any feedback would be very much appreciated

lemtrada sounds like the ideal treatment if you want to hit it hard and early.

there are quite a few facebook groups about it.

find out as much as you can and get the opinion of your consultant.

it is given by infusion so you will have it in hospital but i don’t know if it’s as an inpatient or outpatient.

you’ll probably feel weak for a day or two afterwards.

it is one of the only two drugs that reduce the risk of rrms becoming spms so that’s a very good reason to try it.

good luck

Hi Felicia,

I had the second part of my Lemtrada treatment in November. Like all things MS, I think it can be different for everyone, but my experience

  • first year, five days of infusions - itchy rash was the worst side effect of this for me, though that was improved by anti-histamines. You have a cannula put into your arm and drugs administered via that. I had this in the day unit but stayed in the UCLH hospital hotel called the Cotton Rooms. Do you go to Queen Square hospital? I had excellent treatment and they keep a very close on eye on you.

I would recommend preparing with books, audio books, downloaded TV/films on your tablet. Prepare to get a bit bored, a bit stiff and itchy! Food was ok, though it’s good to have some favourite snacks/drinks. 12 months later, you have the same treatment but just over 3 days.

  • I felt back to ‘normal’ (whatever that is with MS!) within a week

  • you need to be very careful with food in the first 3 months after transfusion to avoid getting listeria while your white blood count is very low. Also good to avoid getting colds, if you can!

  • it hasn’t been a miracle cure for me in the past year as I’ve had some sensory relapses. BUT it is one of the most effective treatments out there. I considered it a calculated risk to preserve my mobility etc - being able to walk properly is worth any of the side effects in my view.

Ask them lots of questions!!!

I hope that helps - good luck xx Happy to answer any other questions xx

Thank you, yes I go o Queens square, I see my consultant this a Friday so fingers crossed I think I will have it, if I have passed the tests