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February 2011

Daily Mail Tuesday 8th February 2011 Article on Steroids by Dorothy Byrne.

PMR Patient.
As head of news and current affairs at Channel 4, I am meant to talk about ­subjects others find difficult to discuss. How strange that one of those subjects should be my own body.
As you can imagine, drugs with so much power have side-effects when taken long-term — prednisolone, the most ­commonly taken long-term steroid, can cause osteoporosis after just a few months.
But the potential medical ­consequences hardly bother me on a day-to-day basis. What makes me miserable is the way steroids make me look. That smooth skin comes at a price — we steroid-takers call it the hamster face.
‘You could buy yourself a little wheel to spin round on, Mum,’ said my teenage daughter Hettie.
She did tell me I was still her beautiful mother ‘underneath’. At least she was honest. Many ­people have told me I look just the same — does this mean I’ve always looked like a hamster?
Doctors call our chubby chops ‘moon face’. It’s caused partly by water retention, but also by the peculiar way in which steroids redistribute fat round the body.

Dorothy before: Steroids make takers look puffier because they cause water retention and redistribute fat to the face, back and midriff
We also have little humps on our backs just below the neck, known as ‘buffalo hump’. There is another weird fat deposit round our midriff. Meanwhile, our arms and legs lose ­muscle and fat. Some medics refer to us as ‘lemons on matchsticks’. Others call us ‘potatoes on sticks’. Obviously, they don’t say these names to our puffy faces.
Doctors are, of course, mainly concerned with the long-term medical benefits of taking steroids and so often don’t mention ­temporary changes in appearance to patients. I’ve interviewed ­several people who didn’t know until I told them that the weird fat deposit round their torso was caused by steroids.
Similarly a lot of doctors don’t, or hardly ever, mention the ­possibility that you’ll put on weight. In fact, someone on long-term steroids for PMR might expect to put on half a stone.
The higher the dose and the longer you are on steroids, the more weight you are likely to put on. This is because steroids make you feel hungry, affecting the areas in the brain that control feelings of hunger and satiety.
A study of PMR patients found more than two-fifths put on ­significant weight. Several people I know on steroids complain of weight gain of a stone or a stone and a half. I’ve heard of one woman who put on five stone.
My consultant did warn me about weight gain and advised me to surround myself with oranges (rather than crisps or chocolate).
Thank God she did. I quite often sit down and eat five, one after another. I can polish off two supermarket string bags of satsumas in a night. But despite eating healthily, I have still put on half a stone.
I don’t like the new me. I was invited to a party at which one of the key draws was the presence of the Leader of the Opposition. I looked at my puffiness in the ­mirror and just couldn’t face going out that night. I asked myself if it was rational for a woman to feel too unattractive to meet Ed ­Miliband. Still, I stayed at home.
Feeling isolated, I went on the Internet and was hit by a cry of pain from across the world.
Someone with eosonophilia pneumonia — a lung condition — describes the love/hate relationship patients have with steroids: ‘I began to look like someone I didn’t even know. But the ­alternative to prednisolone was to stop breathing.’
Someone who’s had two organ transplants agrees. ‘It’s a lifesaver, but is hell for its side-effects.’
‘I would rather have the pain than a moon face and weight gain,’ another wrote.
Some ­people feel steroids have had a serious effect on their social lives. ‘I miss being pretty. I used to love having so many friends, but now all I think of is how they talk behind my back about how I look,’ said one woman.

A teenager with Crohn’s disease writes: ‘I absolutely hate this moon face! It is probably the worst thing I have to deal with in my life. I really can’t bear the thought of having to go back to school looking like this. Please can someone help me?’
That poor child didn’t think Crohn’s disease, a serious illness, was the worst thing that has ever happened to her — what bothered her was her face.
People who go on to websites are more likely to be complainers. So I asked some sensible, middle-aged women on long-term ­steroids what they felt. I expected them to scoff at such distress; I was wrong.
Val Emblen, who was 64 when she went on steroids, put on 1½st.
‘When I looked in the mirror, it was a different person looking back. I found it very difficult to go to the hairdressers,’ she says.
‘I didn’t want to buy clothes for someone with this new shape. I felt I was presenting myself to the world as someone who was not me. I didn’t realise how important body image was.’
Her doctor was ­sympathetic and Val agrees the change in appearance was the price she had to pay for improved health. But she believes patients should be warned.
‘Doctors should tell you because knowing it happens to other people is important,’ she says.
Gilly Gilmore was 54 when he was prescribed the drugs.
‘At first, I felt hugely relieved. Then I put on a stone and felt depressed. My face puffed up and it made me feel dreadful. The shock made it much worse.’
Should doctors think more about how miserable sick people are about the way they look?
Years ago, I was so seriously injured in a motorbike accident that I later discovered doctors had considered amputating my leg. I feel grateful and lucky that most people don’t even notice I limp. But for decades my wardrobe has been designed to hide the huge scar on my leg, which has defined my vision of myself.
Millions of people feel a lower sense of self-worth because of changes to their bodies through illness or accident and they could be happier if they talked about it.
I have a friend who disagrees strongly. She has lupus and has also had a kidney transplant.
She’s been on steroids for ­decades and thinks doctors shouldn’t warn patients about puffy faces, as it could put them off potentially life-saving drugs.
But the hospital she attends provides counselling about weight gain and facial and body changes to patients who want it.
In these difficult financial times, it’s hard to see scarce resources being diverted to such services. But couldn’t doctors and family and friends help by recognising and discussing the problems?
When people stop taking ­steroids, their hamster faces ­disappear and most lose the extra weight. Perhaps I will shrivel up like Ursula Andress in the film She. Mostly, I look ­forward to ­worrying about wrinkles again.