Two Years of Lemtrada

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Posted By Scott

This week marked two years since my first Lemtrada infusion and one year since the second round.  How are things going so far?

I spoke before about choosing a disease modifying therapy and the experience of the actual infusions.  Now, with some hindsight it seems to be working well.

Lemtrada was the biggest medical sledgehammer on offer for treating my MS.  Whilst it is not a cure, my neurologist described it as an insurance policy against further progression.  The potential side effects are serious but with two years of monitoring now complete, that has become less of a worry.

Getting In and Out Before Lockdown

Looking back to this time last year and starting the second round, I am thankful for some lucky timing.  The COVID-19 pandemic hadn’t fully taken effect.  Cases had been reported in Europe, but it still felt like something that was far away.  Nevertheless, the spread across the continent was worrying and the combination of a squashed immune system and a deadly virus wasn’t particularly attractive.

Had my treatment been scheduled in March or April, I wonder if it would have gone ahead.  Would I even want to risk a compromised immune system once the virus reached Glasgow?  Probably not.

My MS nurse advised that, if necessary, the second round of Lemtrada could take place up to 18 months after the first one.  We now know that wouldn’t have made much difference in terms of the pandemic.  Would that second infusion be cancelled?  Then what would happen?

Fortunately, these questions can remain hypothetical.  My hope: three days in hospital, get treatment and get home.  Perhaps pre-empting 2020’s lockdown and shielding, I planned to have as little contact as possible with people for at least the next couple of months whilst my immune system recovered.  My, how optimistic that timeframe looks in retrospect!

So How Is It Going?

A year later and it feels like Lemtrada is helping me.  My symptoms seem stable, largely limited to a tingly back and left leg.  The intensity of the tingles is bearable, it doesn’t seem to fluctuate too much.  Am I just used to it now?  Perhaps.  However, previously I would also get a tingly face, head, feet and fingers.  Over the last year, I don’t think I’ve had any such sensations in my head or face and only occasionally in my feet and fingers. Thankfully, I am mobile, can exercise and largely do everything I could before.  Lockdowns notwithstanding.

The Results Are In

At the start of January, I had the annual-ish MRI scan of my brain.  A month later the results arrived, reporting that my brain appeared “largely stable, no MS plaques or other abnormalities”.  Yeeeeessssss!!!!!

My friends might argue the bit about no abnormalities but there’d no arguing that this is great news.  It now means that my scans have been stable over the last two years.  It really seems that Lemtrada is doing its job holding back the progression of MS.  As always, it’s an unpredictable condition but for now, being rebooted twice really seems to have fixed the problem.  For someone who has spent his career in IT, the irony of this is not lost on me.

A Smaller Sledgehammer

I can’t say whether it would be the same for everyone.  During the infusions themselves and in the subsequent months, I have not had any of the regularly reported side effects. Obviously, I’m very thankful for this.  On my Twitter account @grapplingwithms, I have interacted with a few people around their DMT choice.  Some have gone for Ocrevus, a highly effective but perhaps less brutal treatment.

This was not an option for me when starting treatment.  It had only just been approved when I was being lined up for Lemtrada.  It requires an infusion every six months.  Would I have chosen that over Lemtrada had it been available?  Possibly.  The effectiveness combined with less serious potential side effects make a compelling argument for it.

Other MSers on Lemtrada have seen a variety of results.  Some are better, others see no change, whilst others again are worse than before.  Like everything else MS related, it really does appear to vary from person to person. It makes the choice of DMT a difficult one for many.

Next Steps

So what happens now?  Well, I have three more years of monthly blood and urine checks ahead of me.  That’s already a lot less intimidating than it was at the start of the five-year program.  It’s amazing how quickly the first two years have passed.  Time flies when you’re having, well, not fun exactly but a monthly routine.  So far, these tests have shown no side effects and an immune system that has rebuilt.

After two years the apparently stable nature of my MS is encouraging.  If Lemtrada is indeed an insurance policy against progression, I hope that it buys me the time until a cure or remyelination therapy is found.  Whatever happens, Lemtrada has given me back my life, and given me hope.

All This…and a Vaccine

Coincidentally, I had the first dose of COVID-19 vaccine on the same day I received my MRI results.  I received the AstraZeneca vaccine at a very well organised vaccination centre in Milngavie.  Much praise goes to the NHS for such a smooth operation in what must be an enormous logistical challenge.

I felt fine for the rest of the day.  The next day I had what felt like a 24-hour flu.  Shivers, fever, muscle soreness, all that good stuff.  The next day I felt fine again.   This is a common side effect and is well documented on the accompanying information leaflet.  The nurse giving me the jab advised that paracetamol would help with such symptoms and it did the trick.  It’s reassuring to know my body was reacting to the vaccine in an expected way.  And a week or so later, I have no other side effects to report.

A vaccine, two years since starting Lemtrada and positive MRI results all within the space of a few days.  Overall, it feels like a bit of a landmark.

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