Treatment Part 3 – The First Year After Lemtrada

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Posted By Scott

It’s the middle of February 2019 and I’m home again after a week in hospital for my first Lemtrada treatment.  Now started the first year after treatment.

The First Month

I got home from hospital shortly after 7pm and went straight to bed.  Feeling exhausted, with what felt like jetlag, I must have fallen asleep quickly.

I woke up later in shivering and in a cold sweat.  As I went to the bathroom, I felt nauseous.  Uh oh.  This is not a promising start.  Cue the panic.  I would liken this to flu symptoms, which it turns out is a common reaction.  The following day I felt much better. 

The recovery period from Lemtrada seems to vary widely.  I had read of people being back at work the following week, people taking about a month to recover and all points in between.  I received a fit-for-work note from my doctor to cover being absent for four weeks, with the understanding that I could go back earlier if I recovered sooner.

The first couple of weeks followed a similar pattern.  Sound asleep, felt fine whilst up and then very tired and in bed by 7pm-ish.  Fortunately, there was no repeat of the first night’s symptoms.

I didn’t notice any immediate changes to my MS symptoms of pins and needles in my back and left leg.  Lemtrada isn’t a cure but I think reading that, in some cases, people saw a reversal of symptoms had given me an unrealistic expectation. 

March Madness

By mid-March I was ready to return to work and so ventured into the office.  I get the feeling that my immune system wasn’t quite ready for the packed train to and from Glasgow as the next day I felt absolutely wiped and then came down with a heavy cold.

This wasn’t going very smoothly so far.

March also saw me start the monthly cycle of blood and urine checks that come with Lemtrada treatment.  Lemtrada has some potentially serious side effects so this regular monitoring aims to catch these.  I arrived at the QEUH with my urine sample, which I handed over to the nurse as if it were my homework to be marked, and got blood taken.  A few days later, my MS nurse called to say that everything was as expected.  Phew.  One test down, 59 to go. 

The cycle of testing very quickly became routine.  Arrive at hospital, make an appointment for the next month, give blood, hand over my bottles of urine.  Repeat.  Rather than getting an update of the results each month, I was advised I would only hear anything if there were issues.  No news would be good news each month.

Surprisingly, I wasn’t transparent after giving this much blood.

Another month passed and I was going to and from the office without developing any more colds.  And then a moment of real progress

Prior to treatment I had three significant symptoms in my left leg.  Constant but varying in severity pins and needles, notable foot drop (or clumpy foot as I called it) after walking more than a mile or so, and a missing range of motion in my knee.  One day I noticed I had walked further without any foot drop.  And then I noticed my leg had the full range of motion.  Woo hoo!  This is what we wanted to see.

Baby, We Were Born to Run

From there, I wondered if I could start running again.  I hadn’t run since a few days before the initial incident that landed me in hospital, so about nine months.  I really missed it.  I’ve never been a particularly fast runner, but I find it a great way to unwind and clear my head.  Oh, and there’s probably some fitness benefit in there too.   

Even if I hadn’t experienced MS, a nine-month layoff would have derailed my fitness.  I laced up my trainers, which I had only used once before going into hospital and walked to a nearby park which has a path around a small loch.  It’s maybe half a mile around.  I started slowly…it felt weird.  Almost like my legs and feet were not used to the impact.  The pins and needles were still very noticeable, almost like they were vibrating with every stride.

I did one lap.  Not fast, and with a slightly awkward gait.  However, it was a triumph, a glimpse of a return to something I had missed.  A few days later I tried two laps.  A week later it was three laps.  I kept to this distance of about 1.5 miles for a couple of months and then I was able to extend it. By the end of June, I was up to 3 and 4 miles.   Come September and it was five and six miles.  I was back at the distance I was doing before the MS journey began.  Of all the things to happen since I was diagnosed, this has been key to improving my mental health.

Return to the Hills and Martial Arts

The start of May saw me try a walk in the hills; I went out with a friend on a beautiful spring day and we walked six miles.  None of the hills were particularity steep but my legs and feet felt fine and there was no issue from the distance.  Such a good walk and positive result earned us some cake.  And it was good.

In May I also returned to my martial arts club.  As with the running, this was initially tentative.  Kicks with my left leg still felt a bit weird.  I can best describe it felt as if my left foot had several pairs of socks on.   I gradually built up to engaging in pretty much a full practise over the summer.  My progress was both surprising and pleasing.  At the end of May, I attended a course in Newcastle.  

This was notable for a couple of reasons.  Firstly, that I felt good enough to attend and secondly, it would be my first time away from home since diagnosis.  I was somewhat nervous as we set off, but it was an excellent weekend.   I had decided that I would do what I could during the course and sit off if it was too much.  As it turned out, I was able to train through the whole weekend without issues. 

Back to the Gym

Into June and I ventured back to the gym. I like to do some weight training to compliment the running and marital arts.  It was another tentative start, as I was unsure how my balance would be.  For example, would swinging a kettlebell tip me over in a comedic fashion?   Fortunately not, and over the second half of the year, I would go a couple of time per week working on mostly core exercises of bench press, deadlift, rows and squats, with a side order of kettlebells.  There must have been some old muscle memory awakened as I soon found the movements feeling natural again and my strength started to return.

September and October Progress

Another martial arts course came in September, not as far away this time as it was in Dumbarton.  I continued to make progress as this course was focused around grappling and so would be a good test of my balance.  I felt it went well, again it was pleasing to come through it without feeling any negative effects.  It was also cool to see four of my club mates come through their first grading.

The start of October saw me head to the Lake District where I manged two walks in two days of seven and nine miles.  Two things were encouraging – my legs were working without any motion or foot drop issues.  Secondly, I felt fine with no issues with fatigue or soreness after either walk.

The Lake District and a philosophical moment.

A larger martial arts course in November felt like it would be a step too far at this stage, but I did go along on the final day to watch my friends grade.  It was the first time I had seen people from other clubs since diagnosis, so I did have to explain the whole story and why I wasn’t training. 

End of the Year

By December, I was training twice a week at martial arts, running between four and five miles regularly and my strength at the gym felt better than ever.  The monthly tests came and went without any issue. 

Was this normal?  Should I be able to train this hard without issues?  Were all these improvements because of Lemtrada?  I don’t know but as the year ended, things felt closer to normal than they had in a long time.  If I couldn’t quite forget about MS, there were time I came close.  The pins and needles in my left leg and back were still there but now I found MS wasn’t dominating my every waking thought as it was at the start of the year. 

As the calendar ticked over into 2020, I would start preparations for my second (and hopefully last) treatment.  The first year had gone well, better than I had expected, and I was excited to see what would happen next. 

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