@MccFev 

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MccFev

Follow up Lemtrada info

It’s been over a year since my last post regarding Lemtrada. I thought I would offer an update if it is of interest to others considering the treatment. I have now received both the five day and three day treatments. The infusions themselves were fine. On both occasions I had: • rash as predicted for about four or five days. • wobbly legs for a couple of days on returning home after the steroids stopped. • amplified MS symptoms for several weeks after. • thrush from the antibiotics. • fatigue!!!!!! After the first five day treatment year one I also had a chemo brain fog for several weeks but this didn’t happen after the three day treatment. I had a headache the first day of the second round. I was told I would be recovered for work after a month but I have to say it took nearly four months on both occasions for my energy to be back to a relatively consistent level. I am lucky enough to have a supportive partner who made sure I was fed and watered as some days I wouldn’t have been bothered I was sooooo tired. I am however an old girl of nearly sixty so bounce back probably likely to be longer. Monthly blood tests reassuring. I love no messing about with injections, suffering their side effects and all the messing about with arrangements around delivery and storage. I’m busy now getting my fitness back and getting on with my life. I know anything can happen in terms of serious side effects but for me the prospect of 70-80% reduction of relapses and damage was worth it. I am now also on the Overcoming MS programme (which in the end is sensible life- style choices for anyone). Good luck to all trying to make these impossible decisions. Stay strong!
@Highlander

@mccfev Hi I'm glad it's going well for you 😀

@Elisabeth_Turner

@mccfev thanks for that. I'm 4 weeks post round 1. Felt great for the first week, almost euphoric, but turns out that was the steroids. Been feeling pretty bad since then. Sooooo tired and symptomatic. But I'm hopeful from reading your post that this is to be expected and isn't permanent. It's always good to hear from people that are a year ahead of you xx