Let the games begin – Lemtrada Round 1

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So the day has come.

Let the games begin.

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My immune system is misfiring – which is what is causing my MS.

Whenever my immune system is activated (for example, when I catch a bug), it struggles to differentiate between the virus (or infection) and other stuff it shouldn’t be attacking (most pertinently my spinal cord and brain).

In theory, the chemotherapy that I am starting today (a week long dose of Campath/Lemtrada) will wipe out the misfiring elements of my current immune system – leaving my body to then re-boot a new/better one… hopefully without the existing flaws.

The drug’s administration is not unpleasant per se (essentially I’ll be connected to an IV drip for a week), but it’s not without its risks and side effects – and it results in an extreme vulnerability to infection in its immediate aftermath.

I approach my treatment convinced that it is the best option for me, but not without anxiety.

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In the short term, there are concerns about the side-effects. These have been carefully explained to me (to the extent that they were set-out in writing).

To try and summarise the NHS (and related) blerb is not easy – but essentially the most important percentages are as follows:

2% of patients suffer, potentially very serious, autoimmune conditions with serious sounding names: immune thrombocytopenia and anti-glomerular basement membrane disease. But these risks should be mitigated by monthly blood tests, careful monitoring and an awareness of tell-tales symptoms;

34% suffer thyroid disorders. Initially this figure sounds scarily high… but should even the worst of these precipitate, again, these should be identified via the monthly blood tests, and would then be combated via a daily pill. Although no one would chose to have to take a daily medication for the rest of your life, this would seem to me to be a bearable solution;

71% have post-delivery infections (17% suffer Herpes (which, I now know, is not just a STD)); and

there is also a small increased risk of lymphoproliferative disorders, thyroid cancer, and melanoma

In summary: 1-in-50 patients suffer extremely serious side-effects (although these should be “caught” early enough with careful through post-treatment blood-testing); over a third suffer serious side-effects, which then need to be managed with new drugs (which need to be taken for the rest of your life); and a majority of patients are inflicted with post-transfusion infections of some kind of another (to varying degrees of severity).

None of these are things to get too happy about – my ready acceptance of these risks should go to show how heavily the spectre of MS weighs upon me.

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So what’s so bad about where I am that drives this willingness to accept these risks?

At times this year, I have felt as healthy as I ever have been.

I’ve had some wonderful times – with my family; running about our new garden with my boys; and out on my bike.

Cycling-wise, I’ve ridden in time-trials; hill races; 600km audaxes; and up and down some of the most famous climbs in the Alps. I’ve cycled 10,000 miles in 2015 through hail, heavy winds, sun and rain. On ice, trails, tracks and roads. Through congested city centres and across deserted plains.

But in 7 months since diagnosis, I have only been consistently “well” for perhaps 7-8 weeks: I was happy and healthy in June; then again in September. Beyond that, most months have been patchy at best. I have had to spend far too much time being ill.

My diary reveals that I have missed 20 (twenty!) days of work since February through MS-related (unproven) illnesses and malaise. Career wise this has not been good. But this is immaterial. The stresses on marital and family life have been considerable.

There hasn’t been a single day since February that I haven’t suffered from residual pins and needles and sensations of tingling numbness.

And I been amassing new MS symptoms with apparently reckless abandon.

The identification of relapses is an art not a science, but it seems that I’ve had 4 (perhaps now 5, see below) relapses in the last 7 months. The average figure for annualised relapses for MS patients is about 0.3 – I don’t have a calculator but I’ve exceeded this by some 30 times.

For two (perhaps three) periods I’ve been unable to walk properly and have struggled with stairs and uneven surfaces.

There were a couple of times I found myself struggling to sit up. I’ve briefly lost control of various muscles, and my balance; and have been scared by intermittent issues with my eyesight.

This last fortnight seems to have been designed to pave the way for my treatment: another 4 days off work (during a critical period of the project I was working on); two new MS symptoms (that have lasted over 48 hours each so classify (by definition) as additional “MS relapses”; and an exhausting fatigue that has become all too familiar to me. Irritable at home and at work. Sleeping 11 hours a night. This time (“bout”?) the “lassitude” lasted 8 days (it’s nearly always 7 – 10) – like clockwork.

For all the ups and downs of the last year, this last fortnight has been when I have felt the most “beaten”. By contrast, previous lows (bar a couple) have been offset by a surge of adrenilin (initial diagnosis included) – they have almost increased my fight, rather than reduced it. But this last relapse has just been depressing. I’ve been stuck in bed. Frustrated. I had to miss my last cycling event of the year – which I had been tentatively training for. And the one response I’ve been able to retaliate with, my new MS Diet, has suddenly seemed inadequate and impotent. I’ve caught myself thinking, if I’m going to go down, I might as well go down stuffing myself with delicious fatty burgers and thick chocolate shakes; descending alpine passes on my bike stopping for creamy slices of rich carrot cakes at every turn.

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All-in-all this is a good time for my reinforcements to arrive – just when I appear to be flagging.

So the “Lemtrada” drugs get rolled in.

I see it as a dirty, great big cannon. It’s only got 1 bullet. This isn’t a treatmen you do twice.

So I hope it aims carefully and with certainty.

Right between MS’s eyes.

So.  Let the games begin.

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One thought on “Let the games begin – Lemtrada Round 1

  1. wishing you all the best and hoping your treatment is successful in beating this terrible condition. my daughter in law was diagnosed last year. it seems to have so many different symptoms and types. hope it goes well for you. xx

    Like

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