Hello sunshine! 🔆
Today, let’s shed some light (hahaha – ahem) on medication and all that it involves. Clue: barely any thrills.
There are two schools of thought, I think, about this. The first is to get MS down on the floor (mat?) when it’s barely had chance to stand up fully. I think I’m grasping for a wrestling metaphor. To get the patient on an aggressive treatment soon after diagnosis. The second, which is what I was offered (and a choice I think I would’ve made for myself, not then understanding the full implications of having the disease), is to start off on a far ‘milder’ treatment and see what course the MS decides to take.
At first, I started on something called Rebif (three injections a week), then after a couple of years, Copaxone (injection every day – I know). At the time of my ‘devastating relapse’, I’d been off medication entirely for over a year (see one of my previous posts – I don’t know which – I can’t do everything for you, brother).
Post-relapse I had a decision to make. Less aggressive Copaxone or full on MS nemesis Tysabri?
Some facts, presented to you as a list:
- Tysabri works by inhibiting the white blood cells that cause inflammation from going into your brain. – I hope you’re getting this down. There will be a short test. I’ve got it photocopied and ready to go.
- It can reduce relapses by over 80%.
Sounds good, right? Almost too good to be true? Yeah, I thought so too.
Turns out there’s this thing called the JC Virus (John Cunningham, not the other arguably more famous JC, Jesus Christ) – from herein I shall be referring to it as JCV. About 50% of the UK population has it, and that’s fine – it stays in your system for, like, life – chances are you won’t ever even know you’ve got it. However. However. If you’re JCV+ – as opposed to JCV- – it can develop into summat called PML or, rather charmingly, progressive multifocal leukoencephalopathy. Sounds jazzy, right?
I needed that. I was parched. Spitting feathers. 🐓 Right. Where was I? Hmmm. Oh. PML.
‘PML is a serious infection that can lead to severe disability or death.’
Can I get a whoop whoop?
What this means is that if you’re ‘lucky’ enough to be JCV- you have a 1 in 14,286 chance of developing PML. If, like me, you’re unlucky and JCV+ your chance is 1 in 1,667 with the risk rising to 1 in 192 after two years.
To quote Joe Gargery, ‘What larks!’
So, as I say: I had a decision to make.
It was hard. I veered between yes and no, hour by hour. My neuro was completely for me agreeing to it. He did a home visit and everything. Although he does only live round the corner from me, so bear that little nugget of information in mind before you start praising his outstanding dedication to his patients! It was good of him though.
Here’s me having my first infusion right at the start of my ‘recovery’ (you have one infusion every four weeks – takes about a couple of hours):
And this is my second, with much-improved hair:
I’m getting ever closer to the two year mark so it’s time to start summat new; this is already in the pipeline, as it were, so I’ll tell you all about it as and when, perhaps even before.
So that’s all for today. Thank you for listening so patiently. Appreciate it.
In time honoured tradition, I bade you farewell with both a wink and a flourish.