Injection of positivity

“Have you ever considered a catheter?” asked the MS nurse.

“Erm, no,” I replied.

She elaborated a little on what would be involved. Suddenly, someone I had just met was talking about my penis in my own home.

“You want me to shove a pipe up where?” I found myself blurting out.

I wouldn’t have minded, but she was only here to show me how to inject myself with Avonex, a beta interferon. Instead, we seemed to be discussing my bladder retention problems. After I’d rejected her idea (I know some patients swear by catheters, but I just don’t fancy going down that route), she had another suggestion.

“Well, there is a device that vibrates that you can use to agitate the bladder.”

“Does it buzz?” I asked.

“Yes, it’s rather like a… well, yes it does buzz a bit."

Yes, I can really see me taking that into the toilets at work. ‘Why does Andy keep disappearing into the loos with a vibrator?’

This is the way it seemed to go with my attempts to start on a DMT, as I’d had a few false starts. I was told the DMT could reduce the number of relapses by around 30%. But I initially resisted for the simple fact that it involved sticking a needle in my own body. And the added possible thrill of a few nasty side effects.

Read more about disease modifying therapies

Once I decided the potential benefits outweighed my concerns, my thyroid suddenly became ridiculously over-active, which delayed matters further. I had to be treated for that serious condition before I could even think about tackling MS. Did my body really hate me?

But now was the time. There was no looking back. After a quick practice on a piece of sponge the MS nurse had brought with her, I removed the real thing from its packet and took a deep breath. Then I introduced the needle to my leg for the very first time.

The Avonex (beta interferon) years – 2008-2016

I won’t lie to you, the needle for an Avonex injection is quite long. It has to be, as it delivers its cargo deep into the muscle. On the plus side, you only have to do it once a week.

The side effects were unpleasant in the first few weeks, but nothing too bad. A couple of paracetamol and two ibuprofen controlled the headaches and nausea. And I always injected just before bed, so I slept most of these side effects off.

After a couple of months, the day following an injection was just like any other day. Unless I stood up too quickly, in which case I might experience a rush of nausea, which was almost always short-lived.

The Tecfidera (dimethyl fumarate) months

After eight years, my neurologist told me that Avonex had failed me. This confused me as I hadn’t had a single major relapse. But my mobility was getting worse anyway and he thought it was worth trying something else. He dangled the carrot of Tecfidera (dimethyl fumarate) in front of me, a tablet-based treatment. I’d become used to the injections but I never thought “Oh good, it’s injection night”, so I was more than willing.

And I was doing fine on them – no upset stomach as sometimes happens with this drug. But my body had other ideas. “A tablet? Ha! That’s far too easy.” So my white blood cell levels were sent into freefall and my love affair with Tecfidera was over.

The Brabio (glatiramer acetate) years – 2019-present

Note: Brabio is also available with an auto-inject pen so you don’t need to see the needle.

A shorter needle, but three times a week. The first few months on Brabio (glatiramer acetate) were tough. At first, injection night seemed to be coming round every two minutes and when it did, it was painful. On removing the needle, the injection site stung like a very large, disgruntled wasp had taken against me.

But it’s amazing what your body can get used to. Soon, the stinging sensations faded to nothing and it became just another part of the bedtime routine. I always inject in the legs. And if you choose your spot carefully, you can push it down into what seems like dead flesh and there’s no pain whatsoever.

Best of all, I’ve experienced absolutely no side effects and no relapses.

The needle and the damage averted

A quick calculation suggests that by Spring 2023, I’ll have injected myself with Avonex or Brabio a thousand times. Every Monday, Wednesday and Friday, wherever I am, whatever I’ve been up to, this is the last thing I’ll be doing before bed.

Caption: New Year’s Eve 2021. Well technically it was New Year’s Day 2022, as it was about ten minutes after Big Ben had chimed.

No wonder it’s become a part of my life as much as brushing my teeth. But has it helped to keep MS at bay?

Who can say for sure, but I still haven’t had a major relapse. My level of disability is increasing with every year, but never because of an attack. And you wouldn’t, I hope, consider skipping your dental routine because, well, you’ll probably get tooth decay in the end anyway. You keep diligently brushing, as you hope to delay the inevitable for as long as possible.

I realise that everyone is different when it comes to DMTs and the reaction to these injections is varied. But I’m definitely glad I took the plunge. And I’m still content with my decision to avoid taking a vibrator into the toilets every time I need to pee.

You can buy Andy’s new book, ‘Balls to MS: 20 Years of Discovering Your Body Hates You’ on Amazon.