The undoing: Avonex – the decision to stop

Back from a three-week trip to the USA in 2013, I (finally) realised that I had to stop filling my body with interferon because it was actually disabling me.

It was the summer after Dad died and I had made a big trip to see some dear old friends as a treat to self after what had been a terrible few years. I planned a massive tour of the USA; it was way too ambitious. First to Beth in Pennsylvania, then to Mary in Albuquerque, then to Portland, Oregon (the hipster place to go du jour), then a two-day train trip to Milwaukee to see other Beth, then back to Pennsylvania before going home. At least I didn’t try to go to NYC too!

All in all, it turned out to be a terrible trip. Although I caught up with people who mean a lot to me, met their children, and saw some amazing things (that train journey was just incredible), I really wasn’t well.

I’d stopped taking Avonex for the duration: after ten years, injecting every week, it was time for a break. Now released, my immune system woke up and started purging. Though at the time I had no idea what was happening – I was just shitting uncontrollably, feeling super anxious, and was having difficulty walking. It was awful.

But I was soldiering on, carrying on as normal as much as I could. As soon as I returned home, I started back on my injections. This was the point when I realised the interferon was doing me harm and how much I had put up with for the past decade.

I had such a reaction to that first injection in a month: my legs HURT, I felt like CRAP, I had a headache, sweats/chills, an achy and weak body (especially my thighs that were particularly crampy in bed), runny nose easing off to constantly blocked/snotty nose, worse on awakening, dry throat, vice around my head, eyeball ache, back of head/neck ache, foggy thinking, disrupted sleep…

And this had been an everyday normality for me! I think the break and return shook me out of putting up with things that I’d got slowly used to.

I had some new insights into how things were. I no longer accepted the expected benefit of this treatment, so the day-to-day difficulties were just not worth it. The equation didn’t balance anymore. This, along with experiences in the previous couple of years with medical professionals proving themselves to not always know what they’re doing, made me question everything. I was starting to wonder if I even had MS at all or if all my symptoms were, in fact, caused by the Avonex.

It was like I’d spent my life up to then sitting looking at a nice landscape, then my chair got swivelled round 180 degrees and I discovered that behind me had been an enormous picture window looking out on the most incredible view; before I’d just been looking at a painting. From grainy analogue to full HD. I had recently watched my dad die, remember. These were profound times. Here’s a little diary entry I wrote at the time:

11 November 2013
Avonex: I’m not taking it any more. I no longer find the day-to-day low-level rubbishness and weekly uncertainty is offset by the possible far-in-the-future benefit. Also, I need to see more clearly what is symptoms of the Avonex and what is other stuff.
MS diagnosis: I’m just asking the question “Are you sure I have MS?” I’m no longer convinced and would like my case reviewed. I feel like I’m just in the system, on the patient conveyor belt, my care is a tick-box exercise.

What happened next

After I had decided, I did one more injection just to make sure (and to sort of reset the crapness) then I just stopped. I didn’t consult my medical team. My body, my decision. I felt empowered and in control. I wasn’t sure I’d be able to explain it and I didn’t want them to persuade me otherwise.

I cancelled the monthly delivery, which triggered a notification to my nurse, who called me then told my neurologist. I was actually surprised how little resistance I faced. I was ready for a fight, but there was no pressure to continue at all. Which made me wonder if I should have been taking it in the first place!

November 2013
I anticipate that my medical team will not be too happy and will try to persuade me to continue. I ask them to show me good evidence that it has a beneficial effect in my case.
In the long term, it may be a risk. Maybe I do have MS and it will help. But the possible pay-off is too vague, too far in the future, and too uncertain to make living miserably in the now worth it. I could die tragically young, and will have spent my days feeling rubbish for nothing. I am determined to live in the now, and what will be will be. Writing this makes me feel confident, bullish and right. I feel like an unorthodox heretic who is misunderstood and sidelined because they take an uncommon line. It’s the difficult path, but I have to be authentic to the truth in myself.

But little did I know this was just the beginning. And what idea could I have had that what I would discover would have its roots way deeper than the interferon or the MS diagnosis?

What I did know was that I was all wrong physically and I had to sort out the mess that I’d become. So the process of physical readjustment started here, continued for years, and made me more unwell in the short-term than I had ever been.

NEXT: Interferon be gone, 2013–2015

CHIN UP 5/14

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