Treatment Part 6 – 2020 Hindsight

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Posted By Scott

For this last part of my series on treatment and with my second Lemtrada treatment in the books, it is back to the monthly cycle of checks.  And then 2020 happened…

March Madness

The first month after treatment followed a similar pattern to the previous year.  For about three weeks I had little energy and was in bed early most nights.  Gradually my energy levels increased.

As the middle of March arrived, I was due to return to work but first it was back to the hospital for the monthly blood and urine checks.  A few days later my MS Nurse called to say my lymphocyte count was extremely low, as expected.   

At this point, Coronavirus was taking more of a hold compared to a month ago.  However, there wasn’t any specific guidance for me to follow beyond the hygiene steps given to the rest of the population.  This would change soon.

The day after this hospital visit, I returned to work.  And then received a call to tell me I was being laid off.  Not exactly the best news to come back to.  I’d seen over the previous couple of years in the job that the company didn’t exactly practise what they preached when it came to staff so I can’t say I was hugely surprised.  Maybe even relieved but certainly disappointed in how it was handled.   Still, onwards and upwards.

April Progress

April’s check and this time the hospital was a different experience.  I had a temperature check on the way in.  The reception desk was cordoned off, so I had to shout across a distance why I was there.  By this time, consultations had moved online or over the phone, so the waiting room was pretty much deserted.  I was in and out quickly.  My lymphocyte count was a little behind where it should be.  There wasn’t anything I could do to improve this, but it was something that would be watched. 

After two months of recovery I felt good enough to exercise again.   With lockdown guidelines of one outdoor exercise session per day, I resumed running.  Unsurpingly my fitness was rubbish, but I manged a couple of miles.  I was gradually building back up before the brakes were applied.

Shielding Starts

I received a letter advising me to shield.  Due to my MS, Lemtrada treatment and probably having asthma as well, I was to shield and have no contact with anyone outside my house for 12 weeks.  Ouch.   That sounded like a long time.  Writing this at the start of September, it’s hard to believe I’ve not seen many people now for six months.

This put the kibosh on my running until July so I did some internet trawling for indoor exercise programmes that I could follow.  I can recommend Fitness Blender which has all sorts of workouts of varying lengths and intensities.  This allowed me to get some good cardio workouts whilst staying home.

Home Testing

Come May and shielding meant that my blood would be taken at home rather than hospital.   This would continue through the June and July tests.  It was a seamless process.  My MS Nurse called to tell me it was happening; I would get a call from the mobile phlebotomy department to confirm he appointment and the nurse turned up at the scheduled time.  The middle appointment was the first time in awhile when my veins didn’t cooperate, and it took a few attempts to get the blood out.  The home visits meant that my urine tests wouldn’t happen, but my MS nurse explained that any potential kidney issues could still be picked up through the blood tests.

May’s test showed that my lymphocyte count was much better than in April and getting closer to normal.  However, July’s test suggested my iron levels were particularly low and this is something that would be watched in case it was a longer-term issue. 

In July, there was welcome news that although shielding was to continue for another month, I would be able to go outdoors again for exercise.  Yippee!!! I resumed running and found my fitness coming back.  The mental health benefits I felt from this were huge.

Back to the QEUH

The August monthly check was back at the hospital.  After three months without needing it, I remembered to take my urine samples.  As with my visit in May, a nurse took my temperature on the way in.  The reception desk now had a Perspex screen and the waiting area had considerably fewer chairs than normal.  And only one person waiting.   I was taken quickly, and my veins gave up their blood without arguing.  No issues reported after this test, so things seem to be back on track.   

18 Months of Lemtrada

That brings us up to the present day so let’s sum up where I am 18 months into the Lemtrada experience.

Physically I am feeling good.  The pins and needles in my back and left leg are still there but generally it is not too intense.  I am back to running up to eight miles, enjoying it and not feeling any negatives afterwards.  I have been practising my kata most days and taking part in virtual martial arts sessions, so my balance continues to improve.  The monthly checks so far have gone well, and I’ve not shown any signs of the potential Lemtrada side effects.   Apparently these happen most often in the second year these are but so far, so good.

Mentally I’m feeling positive.  It’s still early days but so far it feels like Lemtrada was the right decision for me.  Getting back to physical activities has been huge for me.  It’s has helped me deal with MS and with the restriction lockdown has placed us all under.  Losing my job was certainly a blow to the morale but I think the progress I’ve made since starting Lemtrada has helped me deal with it better than I otherwise might. I’m still not employed but I’m looking for work.  Does anyone need an IT consultant? 

The lack of face to face contact during Lockdown has been hard but fortunately Zoom has been a decent substitute, enabling me to maintain contact with friends.  It has been weird to see people only ever from the waist up.  Does everyone still have legs?

What Next?

From here, I have another three and a half years of monthly checks.  I’m not sure what happens after that.  It’s odd to think that had my first treatment not happened when it did, I may not even have qualified for Lemtrada given the 2019 investigations.  Equally had my second treatment not happened in February due to Coronavirus, I wonder when I would have received it.

Nevertheless, I’ve now had the treatments and it seems to have helped me considerably.  Now I’m feeling the most positive about the future than I have done since my MS journey began.  Whilst I’m sure there will be more challenges along the way, being able to run and train again has given me back my life and my hope is that Lemtrada continues to hold back the progression of my MS for years to come.    

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