Diary of a steroid taker by Carla King

Carla returns with a second blog on her most recent relapse, this time detailing how she got on with taking steroids, despite an initial reluctance. 

Recently, you may remember that I wrote about my new relapses, and of the emotions I went through with the changes I was experiencing. Having given the game away via my very catchy title, you’ll see that one of the options presented to me was to take steroids.

This was discussed at great length with me, much more than it was thirteen years ago, after my last relapse. My team were very careful to tell me about the side effects, and why they were suggesting steroids. I have to hand it to them - the decision-making process really felt like a partnership. It was my decision either way.

I took a few days to think about my choices. I never like to rush anything.

The conflict of taking steroids

I think if the relapses had been purely sensory, it would have been a straightforward ‘thank you, but no thank you.’ Our greatest concern was around the nasty new symptoms which were very concerning in the way in which they were manifesting. It was clear things were worsening, and on a weekly basis. 

I’d had three previous relapses, including one of optic neuritis which left me blind for six weeks. We’d discussed steroids at each relapse, but I’d always declined, as I was told that it wouldn’t change the outcome, and may potentially make things resolve more quickly.

I didn’t like the thought of the side effects back then, and thirteen years later, they didn’t sound any more attractive. 

The steroids could have been administered via an intravenous drip in hospital, but with the dreaded virus and as a clinically extremely vulnerable person, the hospital is not my favourite hangout. 

I took a few days to think about my choices. I never like to rush anything. I suspect this was about my needing to take control of a situation which felt out of control at the time. Whilst I didn’t want steroids, I felt I needed to reduce the inflammation as quickly as possible. And so, I started the methylprednisolone.

Day One

You’ll know me, by now, as a truthful blogger. The little blue pills seem very tiny and innocuous, but put five of the little buggers together, and they are a powerful ninja force. To add insult to injury, they taste horrendous, and leave a nasty metallic taste in your mouth for an hour after taking them. 

Plus, if you’re a bit over-enthusiastic, and haven’t read the instructions properly, you’ll know that never again shall they pass through your gullet without first having had some food. 

Day one went so well that I wondered what all of the fuss was about. I even slept okay (for someone with MS, obviously).

Day Two

I call this ‘side effect’ day, because everything listed on the patient leaflet seemingly came to life, as was just my luck. My appetite increased out of absolutely nowhere, insomnia kicked in, and the steroids picked up on my favourite MS symptom: my slow gut motility. 

However, the absolute worst – and unexpected issue – was the effect they had on my mood. With the relapse news, I was hardly skipping off into the horizon, and of course I was going through the grief cycle. But I hadn’t quite expected to be sobbing into my phone when my MS nurse called to check in (sorry, Sophie!). And that was only 10am.

Day Three

It was on this day that I noticed weight gain. These bad boys know how to kick a girl when she’s down. My sleep also took a hit that evening, and everything else that happened on the second day continued. 

It quickly became clear that it was the steroids that were affecting my mood, and sure enough after I stopped taking them, I returned to my usual, okay self within 48 hours.

Day Four

I was now averaging about two-to-three hours of sleep a night, and I had throbbing headaches. This was the worst day of the five - I couldn’t wait to finish.

Day Five

I came to the realisation that the headaches weren’t directly happening as a result of the steroids. On the final day, I was so tired that I couldn’t communicate properly. My word-finding was an issue, and I felt slower. 

What did I do to combat the side effects?

I did what every normal person does when wide awake at 2.30am and made videos for the MS community! Alternatively, there was paperwork, a gazillion boxsets on Netflix, cleaning (say, what now, Carla?), anything quiet at that ungodly hour.

The metallic taste was made better by taking them after having eaten half of my breakfast, and fruit teas. Some people swear by cough sweets.

The weight gain rattled me. I’d lost 40 pounds over lockdown, almost 100 in five years, but I reminded myself that I’d lose it again. I gave in, as I had bigger fish to fry (no pun intended).

For the headaches, I drank my daily two litres of water, and had a couple of extra teas, all of which helped a little.

If you experience bowel issues with your MS, you may want to have a strategy sorted with your bowel specialist before you start. 

It quickly became clear that it was the steroids that were affecting my mood, and sure enough after I stopped taking them, I returned to my usual, okay self within 48 hours.

Overall, the majority of the side effects disappeared within a day or so after finishing. The weight gain rectified itself within a month. The gastrointestinal issues continue, but when are they not present? And my bed is my BFF, once more.

Any decision we make about taking steroids is a personal one, and I believe that in order to make the decision, we have to push away our initial reactions and research them.

Where am I with my relapses now?

Though I’ve had a few exacerbations since taking the steroids, I am grateful now that I was offered them. The area I was most concerned about improved rapidly after steroid week. In the following six to eight weeks, my toes and fingertips returned. My knee is still numb, but I can live with that, even if it turns out that it’s permanent. It’ll take up to a year to work that out.

Would I do this all again?

The truth is, it will depend on the situation. If it is anything like it was in my last relapse, where I see things worsening quickly, or I am in pain, then I’ll take them, at least knowing now what to expect.

If it is sensory, and manageable, with a decent amount of support, then no, I will endure and wait it out.

Any decision we make about taking steroids is a personal one, and I believe that in order to make the decision, we have to push away our initial reactions and research them. As we’re all so individual on these tablets, we can’t rely on what Jo Bloggs says they experienced on our favourite online forum. It’s really important that we look for facts, reflect on our own situations, and assess the support mechanisms we have in place. In my case, my relapses and I are glad to have put MS back in its box… for the time being.

Carla King was diagnosed with MS in 2008, having had her first relapse in 2005. Follow Carla on Twitter @CarlaKCoach or via her blog: mymsbullyandme.blogspot.com.