Hello everyone. I thought I’d write a quick post for anyone thinking about or due to have Lemtrada.
I’ve just finished my first 5 days of treatment and got home last night. In a nutshell it was fine.
Day 1,2,3 IV steroids were given for one hour then a break for another hour than 4 hours continual IV Lemtrada. Day 4 I went without the steroids but was put back on them yesterday as I got a rash. When on the Lemtrada your heart rate and blood pressure is measured every 15 minutes or so.
Side effects: Day one I really ached, not unlike the effects of Rebif. Day 3, unsightly rash. I’m tired but not totally debilitated. Overall I’ve felt woozy and my eye sight has deteriorated sightly which worries me but I’m hoping this is due to being overtired and pumped with drugs. No other MS symptoms have reared.
I’ve been sent home with some anti viral medication and a sick note for a week. Follow up appointment in a months time.
So, no regrets. Being chained to the drip was what I found the hardest, that, and the lack of general privacy and autonomy afforded to the patient role. Spending a few days on a neurological ward has only reinforced my reasons for having this treatment. The staff were pleasant but a life in and out of hospital, being dependant, vulnerable and at the mercy of others is not the life for me.
My neuro bought along some students to look at the MS patient (me) yesterday. I was asked an array of questions one being does the risk of ITP worry me. My answer was no, that the risk of MS worries me more than any other. I made sure to say MSers don’t want risk adverse doctors, we want doctors that listen and treat hard and early.
Lemtrada is my hope in a bottle
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