Three months post-Lemtrada Round 2: the data says…. it’s only MS


It’s been 14 weeks since my 2nd dose of Campath.

Hopefully I’m still only on the very first rung of the long ladder of “the rest of my life” but I thought it’d be worth typing out my experiences of the last few months – not least for those who about to embark on the same.

The similarities in the way my body reacted to Round 1 compared to Round 2 have been marked:

After both treatments it took 3 weeks before I could get back to work – and even then, I had to spend a further week largely working from home. It’s worth adding a footnote to this: I am self-employed so was unpaid during this time. There was certainly no reticence on my part to get back into employment – I just couldn’t overcome the lethargy and spells of vertigo. I have heard accounts of patients returning to work a week after their treatments – however brave or weak you might think I am, there was no way I could have got myself to work that soon.

After 2months the feeling of perpetual hangover seemed to fade. By then I was doing some gentle bike rides and breathing fresh air again. I probably could have been back to full time work – but, luckily, I was in the position of being able to slowly ramp up through 3, 3 1/2, then, for the first time just recently, a 5 day week. I am still probably working at half pace though – concentration and memory both seem like fuzzy relics of what they should be.

As the new year rolled into gear, slowly the side-effects of my treatment began to take a back seat. My day-to-day concerns began to focus once more upon the minutiae of getting a family routine going again. I was still taking the chance to work from home whenever possible – but, on occasion, this started to become a luxury rather than a necessity.

Getting back to cycling was hard – like it always is. But by January, friends on a Saturday ride were rolling their eyes as I overtook them on climbs – “thought you were meant to be recovering”; “easy for some!”. It hadn’t felt easy though. Cold, dark mornings wrapped up in thermal gear – trying to get my body going again, when it didn’t really want to. It was mid-January when I started to be able to accelerate up, rather than just survive, the steeper climbs – and at our weekly “Lunch Club” I started to be able to do my turns at the front again. Then, this last week, when my alarm sounded for those 5.30am starts, a strong coffee was enough to get me going; a month ago it felt as though I could sleep another 8 hours as I craved more rest.

So… so far, so tentatively good.

But the neutrophils (infection-killers) in my latest blood tests are still low (~0.5 vs a healthy minimum of 2) so I’m still vulnerable.

In fact, at a recent appointment at the orthopaedic department, the consultant grew concerned about apparent painful infection in my shin bone – which he had heard could be linked to patients with suppressed immunity. This led to another hospital visit, another scan… with a 4 week course of antibiotics on the cards.

Lots of letters are still pinned to my kitchen notice board with dates and times for future appointments of one sort or another, as both the NHS and I keep a careful watch on my ups and downs, my readings and my scores: monthly bloods; quarterly catch-ups; and umpteen referrals for this and that.

And then the kicker.

Out last Sunday morning, my optic neuritis came back. It’s a really foreboding symptom and pretty debilitating. The sensation is being unable to focus where you want to look – as your eyes and brain play tricks on you. It’s been 18 months since I last suffered this – and then it was my left eye. This time it’s definitely my right hand side – this creates concern that this might be a “new” MS symptom (or relapse – i.e. another lesion on the spine or brain). As I type this, I’m struggling to focus on the letters or to keep them in my gaze. I am losing track of the mouse curser when it moves across the screen.

I liked it that my day to day concerns had become about the minutiae of getting a family routine going again. I hope nothing else is going to get in the way.

It’s three weeks until March – my “MS Danger-Zone”. I wonder what it will hold this year – I’m getting ready to circle the wagons….



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