Forum

Had first round of Lemtrada

Last week I had my first 5 days of Lemtrada, after my neuro felt that Plegridy was no longer working for me.

It went well on the whole, I got the rash which was effectively dealt with by an additional Hydrocortisone infusion for a few days, and I felt very tired by the end of each day but put that down more to the travelling to and fro.

I also had an infusion of an anti-sickness drug which made me very spaced out on the first couple of days, but my body seemed to quickly adjust to it so not so bad on days 3 - 5.

Calculated that by the end of the week they’d infused about 10 litres of fluids into my veins, - my legs were swollen and I’d gained about 5lbs. By the Friday i needed to pee urgently every hour or so and that carried on till Sunday, but by then the swelling had gone down and I’d lost the weight.

No other immediate side effects yet, just my legs are a rather weak; I also have arthritis in my knees and it seems to have had a detrimental effect there. Will keep an eye on it.

AngC

Congratulations Ang

Lemtrada is a drug I’m rather envious of / about. So I’m always pleased when someone takes up the baton of the scary drug and runs (with a bit of good luck and a fair wind) with it.

I’ll keep my fingers Xd that it all carries on as well, that you throw off the fatigue and that knackered legs become a bit less frequent.

Sue

1 Like