A mixtape for multiple sclerosis

A mixtape for multiple sclerosis

Wednesday 5 July 2017

Take a chance

I’m starting with an apology and picture of a cute kitten to make things better:

If you’re still here, then I’m still sorry because for those of you who read last week’s maths-based effort and were hoping for something less numbery this week, I’m afraid this one’s back to the figures.

I know, it’s like checking your school timetable and discovering that yes, it is in fact double maths. And not just double maths, but double maths in the insanely hot temporary classrooms being taught by that supply teacher with the breath.

Oh, and there's a bit of science here too.

But it’s had to be this way because I’ve just got the results of a raft of blood tests and I need to get them down in words so I can start to deal with the numbers.

Blood tests tend to be part and parcel of MS and depending on the disease modifying drug you’re on, you may be required to undergo regular monitoring.

This will indicate whether you are at risk of: infections, thyroid damage, liver, kidney and blood problems, heart irregularities, eye damage or this nasty little bastard.

I’m six months into Tecfidera now and aside from a few flushes and a constant runny nose (support forums tell me this is Tec drip) appear to have been okay.

But this is just surface monitoring, the real test is in the thing you can’t see – the numbers found in the red stuff swooshing its way around my veins.

The key thing to look out for with Tec is lymphocyte levels. These are *science alert* a subtype of white blood cell which contain T cells and B cells. In MS, the activation of some of these cells can cause an abnormal immune response against the central nervous system resulting in demyelination - this is the destruction of myelin (the fatty sheath which surrounds and insulates nerve fibres) which causes the symptoms of MS.

Tecfidera is thought to work by dampening down the actions of the T and B cells, therefore inhibiting the immune system and reducing the possibility of relapses.

But the difficulty is, dampen down lymphocytes and the immune system too much and you leave yourself open to the risk of developing the aforementioned nasty little bastard.

Lymphocytes should be anywhere between 1 and 3. Mine started low, at 1.2, and since being on Tec they have gradually dropped. My latest results show them at 0.74, if they drop to 0.5 I will have to stop because 0.5 heralds the start of the danger zone and the gateway to the risk of developing the NLB.

On the other hand, as a disease modifier, Tecfidera’s efficacy is currently rated as good – with relapses dropping by an average of 53% and disability progression slowed down by 38%  
(Note the ‘on average’ – my experience on Tec could be far better, or far worse, then these numbers.)

So what I need to work out is how to reconcile the risk of my dropping lymphocyte levels versus the risk of relapse – while being aware that the average efficacy may not apply to me anyway. Arrrggh.

It really just feels like I’m making quite a leap of faith into a swirling vortex of numbers.

A thought which can be best summed up by this:


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