The Hunger Games

Question of the day!  Why are there never any positive side effects on the leaflet you get with drugs?  Wouldn’t it be great to see “taking this drug may cause superior intelligence” or “taking steroids allows you to eat loads of cake”….I wish 😊

I’ve been prescribed steroids on a number of occasions during the last 5 years as they are used as a short-term treatment for flare-ups of my Ankylosing Spondylitis.  I’ve had steroid injections directly into my muscles.  I’ve also had them intravenously into the vein when I had an allergic reaction to the biological drugs.  I’ve been on steroid tablets (prednisolone) and had steroid drops for Iritis, the inflammation in my eye.   All my treatments have been very effective at improving my pain and stiffness, but they can have terrible side-effects if you use them for long periods. 

I’ve heard people say that when you’re on steroids you can be so tetchy that you start to get on your own nerves as well as everyone around you 😊.  They do make me feel stronger and I can lift heavier weights at the gym but there’s a big difference between the performance enhancing Anabolic steroids and the Corticosteroids which I take.

Anabolic steroids are performance enhancing and have a profound effect on building muscle mass and strength. Athletes or gym users who use anabolic steroids still benefit from their effects long after they stop using them. For this reason, they are prohibited, during competition and in the off-season, by all athletes who are subject to anti-doping rules.  They also have serious side effects and can be dangerous if used incorrectly.

Corticosteroids (which I take) help relieve the pain and swelling of Ankylosing Spondylitis in the short term. However, long-term effects of corticosteroids are not good.  They include a higher risk of osteoporosis, thinning skin and increased risk of infections which is why they are not prescribed too often.  They are also commonly associated with a Moon face, a medical sign in which the face develops a rounded appearance and whilst I love the moon, I don’t really fancy having my face resemble it.

Dr Google is always involved when I’m prescribed steroids as our research concluded that they also help you pile on the kilos.  We found out they affect your metabolism and how your body deposits fat. This can increase your appetite, leading to weight gain, and in particular lead to extra deposits of fat in your abdomen.  Whilst I love the pain relief I get whilst taking steroids, I don’t enjoy the games my mind and body play with each other about how much cake I can eat and still fit into my jeans.

Before diagnosis my life was often blighted by severe neck and back pain and illnesses that I struggled to understand.  Looking back now, I’m sure they were “flare-ups” of my undiagnosed Ankylosing Spondylitis and I would have greatly benefited from my current medication regime, especially the steroids.  I had one particularly memorable experience, the timing of which  couldn’t have been worse as I was away from home.

I was booked on a very early flight from Gatwick to Barcelona for my work sales kick off meeting.  As Head of Sales I had a big part to play in the presentations and break-out sessions, so I knew I had to be there.  I’d been feeling unwell the day before and when my alarm went off at 4am I felt terrible.  I didn’t believe it was flu as I had no temperature or sore throat.  Every muscle in my body was sore and felt like it was seizing up.  I found it difficult to walk and I couldn’t move my neck.  I was taking Nurofen to help ease the pain, but I only just managed to get myself to Gatwick and on my flight.

When I arrived in Barcelona and checked in to my hotel, I knew I was going to struggle to get through the 2 days ahead.   We started day 1 at lunch time and finished at 9pm.  In typical Spanish style, dinner was booked for 10pm and, bearing in mind I had been up since 4am I was feeling awful.  Not only was I ill, but the organisers of our sales kick off had decided it would be  great idea for us to be seated at tables with our colleagues from other parts of the world for dinner which, under normal circumstances I would enjoy.

As I looked for my name card, I realised I wasn’t sat with any of my UK colleagues who would have understood my lack of conversation and helped me to get through.  I was on a table with a mixture of my French, German, Italian, Spanish and Greek colleagues.  I have always felt somewhat embarrassed at my lack of any language skills in these situations as our European friends can speak perfect English.  However, with the Nurofen and wine going down well, I managed to limp along until midnight before making my excuses and heading off for a few hours sleep before the next day’s sessions.

I just about made it through to the end of the event with no idea what was wrong with me.  Its only since my diagnosis that these periods in my life have started to make sense.  On average it takes 7 years for a diagnosis of Ankylosing Spondylitis and, in my case, over 20 years and these sudden, strange attacks of acute pain were always puzzling and often very worrying.

As readers of my blog will know, it’s been a mental struggle for me to deal with the copious amounts of medication I have been prescribed, including the steroids.  However, they have helped me enormously and recalling those periods of pain before my diagnosis, I am very grateful I can deal with ups and downs through taking the prescribed drugs, despite their side effects. That said, following a recent appointment with my Rheumatologist I am very excited and encouraged about the next phase of my treatment which I will talk about in my next blog.

Since I started to share my experience of autoimmune disease, I have received many messages from all over the world about how my blog has resonated with their own situations and it always brings a tear to my eye.   Thank you so much for reading and sharing my story,  it’s important to me to continue to raise awareness and improve the timeframe for diagnosis of all autoimmune disease.

Until next time xxxx

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