@US-Emma 

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US-Emma

How long was your Lemtrada recovery phase

I had my first Lemtrada dose 7 April 2014 @Sandwich had his approx 1 June 2015 @tracyd had hers 15 May 2015 @vasily was infused approx 10 Feb 2014 We all experienced different recovery periods. I wanted to explore them here to help other patients prepare for their Lem infusions. I know several other people have been through at least on infusion. Please help us reach them (i know one guy in the UK who is a soccer player who had Lem several years ago has posted but I don't remember his handle). If you have been infused please post and answer these questions: When were you diagnosed with MS? What were your worse MS symptoms prior to Lem tmt? Did you have any problems during the week of Lem infusion? Did you experience a sudden change in symptoms in the 2-4 weeks following the Lem week? What was the rest of your recovery like, out 12-15 weeks? We can start a NW thread about overall improvements post Lem too. Here it was really trying to gather info to help new patients through their first few months. Thanks! Emma
@US-Emma

Should be @vasy in previous post.

@US-Emma

Here's my experience: Diagnosis: 13 Aug 2003 Treatment with Lem Day 1: 7 April 2014 Worst MS symptoms prior to Lem: Pain: on meds to relieve nerve pain, muscle spasms, & general pain Fatigue: no longer driving, shopping (even grocery), traveling, cleaning house, showering w/o assistance or attending social events. Several years prior changed my position to work from home. At that time only able to work 4 hours sitting in front of computer Cognitive Decline: Difficulty remembering plots of books, TV, conversations, commitments. Could no longer do simple math in my head. Could not remember telephone numbers. I was so concerned I would miss a drug interaction or prescribe the wrong medication to a patient that I resigned direct patient care in 2007. Problems during the week of Lem infusion: Slight headache the first day. Energy level was high that week. No other problems I even went out to dinner every night (was away from home so it was this or room service). Did you experience a sudden change in symptoms in the 2-4 weeks following the Lem week? No actually I had a complete reversal of my MS fatigue and most of my pain issues when I returned home. This lasted about 2.5 weeks. I was thinking this was a miracle! What was the rest of your recovery like, out 12-15 weeks? About the time for my first labs (1 month after starting Lem) I started to feel like I had the flu- overwhelming symptoms of fatigue, achy ness, irritability. So I thought this was the flu- maybe I caught something at the blood draw site? At the time there were no blogs to read and no details about this immediate post-Lem period. A US friend of mine traveled to the UK for infusion 6 weeks after I was infused: 15 May 2014. It was only when she started to go through this same syndrome that I considered this was just the usual post Lem pattern and not the flu. Of note: she had been diagnosed 30 years, me 11, does this only happen to long time diagnosed pts? One thing we are trying to see here. The next 3-14 weeks Fatigue was near total at first but after about 4 weeks it began to lift in the afternoon, then by mid day and at 12 weeks was a bit better that my level just prior to Lemtrada. Fatigue, pain and cognitive decline have all improved for me along with so many other symptoms, but I really want to leave it here and compare my first 15 or so weeks to that of others. Please pass this thread along to other Lem treated patients for their experience. Thanks for your participation!