The ECG was slotted into my ‘group education’ morning about fingolimod, the new MS drug I’m in the running for.
And education it was: we got facts, gave details and will have to pass blood, heart and eye tests to get onto this second-line disease modifying treatment. The six of us waited for nurses, bloods, our ECGs – very quick once the machine was fixed – and then for the 1-2-1 medical history check where I realise there are lots of things I haven’t got wrong with me.
Fingolimod (trade name Gilenya) modulates your immune system by keeping your T-cells ( a type of white blood cell) trapped in your lymph nodes, where they can’t vault the blood-brain barrier and attack the myelin that coats your nerves.
The plus points? 70% reduction in relapses, slower disability progression, a daily pill rather than injections, no regular flu-like side effects. Big thumbs up.
The negatives? If you catch a cold, scratch yourself in the garden or eat some dodgy buffet food, the T-cells can’t help you fight infections in the usual way. ‘Sorry mate, stuck in these lymph nodes. You need to get onto those other lymphocytes – the B-cells – or maybe give the leukocytes a bell.’ (Don’t take my word for it)
Our questions about ‘Will we get colds all the time? Will my acne return? I’m rather prone to cysts… How do we get antibiotics quickly’ Can I eat raw cheeses from Borough Market?’ were met with the infuriating but honest MS answer: ‘It’s different for everyone. We’ll keep a close eye on it and see what happens…’
It is ‘immunomodulation, not immunosupression’ we were reassured. It was not like aggressive chemotherapy. I nodded politely at the time but my comfort came from trust in the MS nurse, rather than really ‘getting it’.
At least we weren’t alone – sharing the experience always helps, you get to share stories of subtle symptoms, relapses and steroids. How we laughed! We did actually, quite a lot.
So now we wait some more. I need an eye check because I’ve had uveitis, and there’s a risk that… but if that’s ok, and my blood is ok, then I should get my first dose in June.
And that has to be followed by 6 hours on an ECG machine, with constant monitoring by a cardiac nurse in person and a cardiologist remotely. That’s because fingolimod slows your heart rate down on the first dose and there’s a risk that…. oh never mind, you get the picture.
‘It’s different for everyone. We’ll keep a close eye on it and see what happens…’