Treatment 1 – Decisions, Decisions

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Posted By Scott

I learned after diagnosis that there is no cure for MS.  Boooooo.  There are several treatments that can slow the progression of the disease.  Over the next few posts, I’ll cover my experience with one of them.

Do the Lemtrada

In December 2018, I had my first meeting with a consultant neurologist.  We spoke about my symptoms.  He tested my movement and balance.  He jabbed me in the face with a needle to see how I reacted (ow!  Stop that!).  He then told me about treatment options.

He suggested something called Lemtrada, the commercial name for alemtuzumab, considered a highly effective treatment in most cases.  This should slow the progression of MS, reduce relapses, and thus reduce the onset of associated disability.  He likened it to an insurance policy.  However as with all treatments there are risks so he directed me to the MS Trust Decisions Aid site to read the about the options before deciding.

Pros and Cons

I went home and immediately clicked on the site.  It’s a comprehensive resource and looking through the various options, I liked the sound of Lemtrada.  Highly effective and only needs two treatments.

It would require two hospital stays, one for five days and then a year late, for three days during which time the drug would be administered via intravenous infusions.    This sounded more appealing than options with daily or weekly injections, mostly because I’m scared of needles.  More seriously, it wouldn’t be dependent on me remembering to take the medication.

It was sunny skies all the way. 

Well, not quite.  The potential side effects of Lemtrada do not sound great.  The most common ones didn’t seem too bad but three potential side effects are more serious. 

  1. An overactive or underactive thyroid gland.
  2. Kidney problems.
  3. Idiopathic thrombocytopenic purpura (ITP), a tongue twister of a name for a serious disorder which prevents blood from clotting.

As unappealing as these sounded, the treatment is followed up by comprehensive monitoring.  After the first treatment, I began a routine of monthly blood and urine checks.  This continues for five years so I wouldn’t escape regular needles, but the test should catch any issues so that they can be treated.  The five-year timescale did seem quite intimidating.  I’ll be in my fifties by the time I finish this cycle of tests.

Decision Made

Weighing up the delivery and effectiveness against the risks and monitoring, I opted for Lemtrada.  My largely unscientific thought process was to hit the MS as hard as possible, as early as possible.  Also, if this buys me more time there may be even better treatments available in the next few years.

I spoke to my MS nurse about my decision which she agreed with.  Reassuringly, the neurology department at the QEUH has had many patients receive Lemtrada and generally the treatment has gone well.  I hoped to continue this encouraging track record.  I was given some more reading material to explain what was coming.

Some light reading, comes with its own purple pleather folder

Before I could be admitted, I had to undergo some pre-flight checks.  Just before Christmas 2018, I had blood and urine tested and a chest X-ray and these all came back cleanly so I was all set.

Come February, I would be admitted for the first phase of treatment.  Excited might be the wrong word but for the first time since the MS journey began, I had a sense of optimism as 2019 started. 

Next time, I’ll talk about my first Lemtrada infusion and the subsequent tests.

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