Most people who had a treatment for alopecia areata tried topical steroids. These can come in different forms including gels, creams and ointments. Becky remembers one which was a “really watery solution” and Grace also had one which felt like “splashing water onto my head”. Rochelle had a steroid topical with a nozzle to help her apply it directly to bald parts of her scalp. Grace remembers using a steroid topical treatment with a sponge to dab it onto patches of hair loss.
Topical steroids are usually applied every day. Becky says it becomes “a habit after a while and you’re so used to it, you just do it all the time”. Laurel put hers on everyday night before bed. Arti and Elizabeth used theirs twice a day: once in the morning after showering and once before going to sleep. Others were told by their doctors to use theirs more often. Emma remembers putting topical steroids on three times a day when she first developed alopecia areata. Becky finds that two bottles of topical steroids is usually enough to last her a few months, but others found they got through lots very quickly and had to go back to the doctors for more.
Krista was told her to apply topical steroids to her scalp every 4 hours in the day. She says she went through lots of bottles of the steroid treatment, which would have been very expensive if she had to pay for prescriptions.
Krista was told her to apply topical steroids to her scalp every 4 hours in the day. She says she went through lots of bottles of the steroid treatment, which would have been very expensive if she had to pay for prescriptions.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I think that was, you had to do it like sort of more, you had to do it sort of every four hours until you went to bed sort of thing so I just did it sort of three times. it was just, it was horrible it was just horrible , you were putting it on, the reason for using it, it was just wasn’t nice at all and I went through about a 100 bottles because I had to use it for three months, every day.
Yeah, what was that like in terms of prescription costs and the sort of financial side of it?
Luckily at the time I was receiving working tax credits child tax credits sorry so I didn’t actually have to pay for it. But like if I was, if I did have to pay for it I’d have been paying probably £7.00 a week, a week to every two weeks so it could have been really expensive, so I think it would have been easier if they could have somehow done it some kind of, somehow got it for free, because I mean there’s certain things you can get for free. But I’d say for anybody paying for the prescription it would have cost an absolute fortune.
Ben saw a trichologist (hair specialist) who gave him a treatment to use alternately with his steroid cream. He describes how he used these.
Ben saw a trichologist (hair specialist) who gave him a treatment to use alternately with his steroid cream. He describes how he used these.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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You kinda just rub it on there and it’s exactly what the dermatologist prescribed to me as well with a steroid cream but, you know, the trichologist couldn’t give me steroids but it was just a steroid cream I put on like every- every morning and every night for about two weeks and then you stopped doing it cos-. And then you’d do the, the, the blood flow ointment. You kinda swap. I did that for a couple of months and you shouldn’t really do it too much cos the steroid cream can be quite nasty to your head.
Rochelle was given a steroid cream at her first and only appointment with a dermatologist. When this didn’t seem to work, she called the department and was told to stop using it but she wasn’t given a follow-up appointment.
Rochelle was given a steroid cream at her first and only appointment with a dermatologist. When this didn’t seem to work, she called the department and was told to stop using it but she wasn’t given a follow-up appointment.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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I think they probably asked [laughs] “Do you have diabetes?” the usual stuff in your family but no, they just had a look. Obviously I think they could see it, no, they just had a look, “Oh yeh, it’s alopecia” and that was it. “Oh, I’m going to give you this,” they probably prescribed me with the same things they prescribe their 10 other people they’ve seen before or so, that’s what it is. They weren’t interested at all, no way was they interested. I remember they just gave me this stuff and after a while they were just like, “Stop using them” and that’s when I was like ‘alright, Rochelle, you're going to have to do something about this yourself’ and that was it. But they wasn’t interested at all.
No ‘come back for another’, no. Not a ‘maybe you should try this’ or nothing, they just said “Stop, stop using it” and that was it. When I think about it now I was thinking ‘wow, you guys are harsh’ but back then I was like ‘let me just stop using, let me try a different thing,’ maybe cos too many things going on in my mind, that I just want to get my hair back that I didn’t think about the way I was actually being treated.
There were some other downsides of topic steroids mentioned, such as:
- Being difficult to apply. Some people struggled to reach bald patches or found it too upsetting to touch them. Often they had help with this from a family member, usually their mum.
- Making the surrounding hair greasy or sticky. Hair clumping together could make bald patches more visible to other people.
- Having an unpleasant smell. Arti said the smell was “odd” and she tried to mask it with perfumes so other people wouldn’t notice it.
- Forgetting to use the treatments as often as suggested. Grace found she became “lazy” about using hers as she “could tell that it wasn’t really working”.
- Side effects and risks. Arti found steroid creams gave her acne spots and Becky had some eczema on her scalp which would sting when she applied topical steroids. Skin thinning was another side effect some people were worried about.
Ben didn’t like that steroid creams made his hair clumpy and flaked off when it had dried.
Ben didn’t like that steroid creams made his hair clumpy and flaked off when it had dried.
Age at interview: 18
Sex: Male
Age at diagnosis: 14
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The steroid cream was a bit of pain because it was quite sticky and that’s why I kinda wore a hat a lot as well. I do forget like-, not just because I didn’t like it, I wore a hat because I’d rub this steroid cream in the back of my head and it clumps your hair and it, it kind of like goes all dry and turned into white flakes. And I used to do that in the mornings cos you had to do that twice a day. So it was a bit annoying before school so I had to do that as well, put my hat on to try and cover it up. And before bed it was a bit annoying as well because you’re not supposed to get it on any part-, any other parts of your body and . And I don’t know, I had to be careful of my pillow I guess at first or, you know. And I didn’t like doing it cos it’s just like-, it makes you feel more ill if it makes sense. It makes you feel there’s something wrong with you if you have to do a treatment. And the ointment thing as well that was- that was no problem doing that. I mean it kind of evaporated on your head but I didn’t enjoy doing it. It was almost like one of those things. I almost went back down to like a primary age. Your mum has to go, “Ben, it’s time to do your so-and-so.” Cos I wouldn’t do it myself [laughs].
Becky’s mum helps by checking her scalp for changes and applying the topical steroids.
Becky’s mum helps by checking her scalp for changes and applying the topical steroids.
Age at interview: 23
Sex: Female
Age at diagnosis: 14
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My mum’s done it for years and years and years. So when I know a lot of it’s fallen out, I’ll sit in front of her and she’ll literally like a monkey go through it all, find tiny patches, big patches and make sure that it’s all rubbed in. Cos you like massage it onto the patches, so although I can do the side of my head where I can see myself, I obviously can’t do the back. So mum will help me do the back and she’ll make sure it’s all covered, and-. But mum’s always helped me with it. And she’s always looked for and helped me with the steroids. She’s always helped me.
What about whilst you were at uni, did you have a friend that would help?
It was more a case of doing it yourself at uni. But then, like I say, I did used to come back a lot [laugh]. It’s-, I did go through a stage of trying to put it all over my scalp, not just the patches. But then I, I thought I was putting too much on. So, so long as you’re thorough with it you can do it, but for my own peace of mind I do like somebody else to help me with it. So I know for a fact I’ve got it all.
Annie X says it felt “wrong” to use topical steroids. She prefers alternative medicines and is interested in the role of diet.
Annie X says it felt “wrong” to use topical steroids. She prefers alternative medicines and is interested in the role of diet.
Age at interview: 15
Sex: Female
Age at diagnosis: 11
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The only thing that the doctor ever supplied us with were the steroids which actually made it worse. I think, because it’s just putting chemicals on your head, which can’t be good.
Could you say a bit more about how the steroids made it worse?
Well, we, because it just comes in like a bottle and you-, one of them was Regain, have you heard of that? That’s what men are supposed to use. But, it was just, it felt wrong. It felt wrong like you were putting chemicals on the hair. I think, I personally think it’s about what you put into your body, because obviously hair grows out of your body. So it’s what you put into your body. So if your body is healthy, it helps. But by putting chemicals on your scalp, that’s not helping anything, because it’s growing through and then it’s immediately being attacked by all these harmful, unnatural substances. So by taking herbs and supplements that aren’t medicated, they’re just increase things. Like one of them, I know, increases my absorption level so I could absorb more water. And I know one of them increases my immune system, because it’s an autoimmune condition. So, I’ve had to be careful about my diet, like I can’t eat too much sugar and that’s not like ridiculous, like I am allowed to eat chocolate and stuff. But I sometimes have dark chocolate instead of milk chocolate, just to limit the amount of sugar I’m putting in. And then, I also make sure I eat a balanced diet and lots of protein because protein grows hair. So I am conscious of what I’m eating and you do have to monitor what you put in your body.
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