Alopecia treatments: oral steroids (tablets)

Grace, Rosie and Michael all talked about trying oral steroids (tablets) for their alopecia areata. No one we talked to currently used them.

Taking steroids in tablet form was often seen as more serious and unusual than using topical steroid treatments, which are applied on top of the skin.

Becky decided not to try oral steroids as she had talked to her mum about it and heard it could cause water retention and weight gain. She worried about putting a medicine “into” her system, preferring that “you could choose how much” topical treatment to apply and “where you put it”.

There were some side effects and concerns for those who had tried steroids in tablet form.

Michael had help from his mum with deciding about steroid treatments. He tried steroid tablets but thinks that they affected his mood and made it more difficult to sleep.

Age at interview 19

Gender Male

Age at diagnosis 13

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But then in terms of the different steroids and steroid lotions, she just helped me like decide that, not to go with steroids again because of the impact it had on my personality last time. In terms of making me hyper or moody. Which it seemed to do. So I’ve ruled that out as well. So I’m just waiting for another treatment now, and then I’ll make a decision then.

Was that impact on sort of personality and mood something that your doctors had mentioned?

Yeah, they mentioned the possible, possibility of it. But I hadn’t noticed it myself. But my friends and my mum noticed it, so. It was-, I didn’t carry on taking them for very long.

In what sort of ways did it have an impact on your personality?

Mainly in terms of making me quite hyper, I think. Like quite excitable, like at random points in the, in the day. And at night time I used to find it, find it hard getting to sleep. Which I still do, but that might be a separate issue.

What kind of impact would that have the next day, if you’d sort of struggled to get to sleep in the evenings?

I used to struggle getting to sleep partially, well maybe due to the medicines, but also in terms of thinking at night time when I was in bed. That was when I did most thinking. And I used to get very upset in bed. And then I was, I’d be really tired the next morning. Or ill. Either one. So on top of not wanting to go to school anyway. That was a struggle, as well.

Would that be sort of like a, feeling ill because you’d been sleep deprived, kind of?

Yeah, I think so, feeling that way, but-. Yeah. I think not like, staying up late thinking caused me to feel ill in the morning, and then I didn’t want to go to school anyway, because I didn’t want to be seen, almost. So it was just difficult. Especially when I was around 14, 15, so.

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Grace says oral steroids helped stimulate hair regrowth, but that she could have only a short course because of risks and side effects.

Age at interview 18

Gender Female

Age at diagnosis 10

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So then after that I went into a short course of oral steroids, which I think was about three or four months, something like that, which was-, I think it was starting off at 40 milligrams, and then decreasing every 3 or 5 days, something like that, by 5 milligrams. So, I don’t know whether the maths works out, but it was kind of those kind of figures. And I believe that did stimulate some kind of growth, but because obviously it’s such a short course because I can’t, they can’t prescribe-, you can’t get the course of steroids for longer than that time ‘cos of the side-effects, which are completely understandable. So, I do believe that that did stimulate some kind of growth.

But then it was a lot of effort to kind of maintain because I was very kind of precautious really cautious of the side-effects of it so. But mostly the weight gain that I knew that could come with it. So, I wasn’t trying to diet or anything at that time, but it made me more conscious of what I was eating to kind of maintain, rather so I couldn’t have what I was eating all the time because I would-, I wouldn’t gain usually but I knew that when I was taking the steroids that that could have made me gain weight and that kind of wasn’t very appealing to me really, cos I used to be quite self-conscious anyway, so to have that on top of the steroids might not be working, and now I’ve put on weight and self-image I think.

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