Get lucky

Brand new year, same old tests.

Yet another blood test tomorrow to see if my lymphocytes have managed to struggle their way any closer to the magic 0.8 which means Cladribine clearance.

Reasons this is unlikely: they haven't managed it in more than a year, I have effing shingles, I remain utterly knackered, it's cold and, judging by previous readings, they seem to have liked the warm better.

Reasons it may happen: had some time off work over Christmas and essentially slept for a large chunk of it, MS nurse suggested I take multivitamins, time is passing and they're meant to rise as the months go by.

I'm honestly not hopeful. And I am beginning to resign myself to the likelihood of not being able to take my next course - and instead embarking on the deeply stressful process of choosing something else.

That is, if I can take something else after the battering my immune system has taken over the past year or so.

GAH!! As if the MS wasn't bad enough, it's all the other logistical and emotional shit that accompanies it which makes it so utterly exhausting and relentless.

As I read the other day, having a chronic illness is like being handed a full-time job you never applied for and can't quit.

An occasional day off would be nice though. Or a pay rise.

Or a helpful blood test.

:: Get lucky by Daft Punk, ft Pharrell Williams and Nile Rogers

Love cats

The cats!

The cats are back!

And, more importantly, the cats are smiling.

The reason why the cats are smiling is blood related.

Admittedly slightly unpleasant on the surface as an explanation, but it’s actually all good. Or at least, it’s good as regards overcoming this particular hemoglobin hurdle.

In July I wrote about the maths of MS and more specifically the maths of Tecfidera.

The delicate balance of lowering lymphocytes to reduce the unwanted autoimmune system response tempered against a weakened immune system with its potential for unpleasant and opportunistic infections.

Back then, after six months of Tec, my lymphocyte levels stood at 0.74, having dropped through 0.77 at three months from a 1.2 starter reading.

My latest results show them back at 0.91 – a massive relief that they are picking up and hopefully heading away from the infection danger zone and Tec-stopping level of 0.5.

Of course there will be more three-monthly blood letting hurdles to go where the readings may have changed.

And even then, assuming those results are okay, there’s still the big leap of the MRI which will indicate whether all this maths, hair loss and cat-related internet searching is working for me.

Like the whole of MS, it’s an unknown.

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% But note the ‘on average’ – my experience on Tec could be far better, or far worse, then these numbers.

Until the MRI, until the next relapse, I just won’t know. But just for the moment I’m feeling quite relieved and ready for:

 :: Love cats by The Cure

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:

:: Take a chance by The Magic Numbers