Topical steroids are prescribed by a doctor to help control psoriasis by reducing inflammation (swelling) and to slow down skin cell production, which can help with itchiness. They are often prescribed with vitamin D analogues, either as a combined cream or as an additional cream. Almost everyone we talked to had used topical steroids, which are rubbed into the skin. The only exception was Carys whose psoriasis was so flared-up when she was first diagnosed that her dermatologist recommended phototherapy instead.
Russell finds a steroid cream work well for his skin.
Russell finds a steroid cream work well for his skin.
Age at interview: 20
Sex: Male
Age at diagnosis: 19
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And I was just picking at it and making it worse and it was getting close to the point where it was starting to bleed and stuff and I kinda thought I should, I know what I need, I need to go back, I need basically the steroid cream and I told the doctor and they said “well if it worked last time, we’ll try it again this time” and try and keep it on, I think they gave me a slightly bigger they told me to, they told me to use it for longer and they gave me slightly more of the steroid cream and half of it has remained unopened but I still have it and I’m glad that they did give to me so a couple of times when it’s flared up I’ve put the steroid cream on it for a couple of days and that sort of takes it right down again. when I say flare up in that sense, nothing compared to both times I went to see the G – just when I think that this, it’s going to get, it could potentially get serious.
There’s no real way of kind of saying that better other than just like my intuition of how bad it looks to me at a particular time and other factors will come into that sort of, if I know it’s a busy time of year so if it flares, flares up during a week with two or three deadlines in – I know I’m not realistically going to bed early, getting lots of sleep and whatnot, I’m probably going to be up late, eating rubbish, getting stressed about work so I’ll resort to the cream. So it’s nice to have it there but since going back that second time to the doctors I haven’t needed to go back and haven’t felt the need to go back. Sort of having the steroid cream and enough moisturiser and knowing a bit more about food, diet and what I should be putting into my body and what I can do to change it in that sense, I kind of, I’m much better equipped now to handle it myself without having to kind of go and ask for the help of the doctor. If it got really bad again I’d have no qualms in going back to the doctor.
Lola uses a combination of steroid and vitamin D analogue creams.
Lola uses a combination of steroid and vitamin D analogue creams.
Age at interview: 17
Sex: Female
Age at diagnosis: 14
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And then there’s one steroid cream for your normal skin and then there’s kind of a weak steroid slash D- D3 cream so that’s vitamin D for your face. It’s the kind of more sensitive parts of your skin, your ears, your armpits, I don’t know if you’ve got it on your groin, so anywhere more sensitive that you don’t want to be putting strong steroids on. And yeah, I think that’s about it. And I know if my psoriasis doesn’t get any better they would like send me to see a dermatologist but then the creams I think from then on are quite harsh, and for my age they don’t want to put me on such strong creams.
The topical steroids young people used for psoriasis varied in:
- main steroid type/ingredients – for example, hydrocortisone or clobetasone (Eumovate, Trimovate, Dermovate) or betamethasone butyrate (Betnovate)
- form (cream, ointment)
- potency (the strength – this depends on how much steroid it contains)
- for different body parts
There were mixed experiences of topical steroids. Some people, like Jack and Russell, found they worked well so didn’t need any other treatments. Jack says his steroid creams help “ease the soreness”. Louis found they provided a ‘barrier’ between his skin and clothes so that they rubbed less. Others didn’t find topical steroids helped or had become less effective after a while. Adam says “the generic thing stopped working for me”. Lots of people felt topical steroids worked for some people but less effectively for others. It could be frustrating trying lots of different steroid creams – Zara and Abbie lost hope at times. Some people worried they had run out of psoriasis treatments to try if steroid creams stopped working for them. A few felt there aren’t enough ‘new’ psoriasis treatments being developed. Steven thinks topicals are less ‘glamorous’ than other medicines: “you don’t tend to hear in the news like, “A wonderful new cream has been made”. Like, there’s no like, they’re not going to report that. “A wonderful new tablet”, they’re like, “Yay, tablets, drugs.””. A few people found it irritated their skin if their topical steroids dried out and became ‘cakey’ during the day. Lucy finds steroid treatments loosen her skin flakes and says she vacuums more often.
Instructions for using topical steroids from medical professionals depend on things like the severity of psoriasis and where it is on the body. Some people said they only use a steroid cream on occasions when they have flare-ups. Others use topical steroids as part of their routine for managing psoriasis – Ella explains, “I put my creams on every single night”. Damini’s doctor told her to only use steroid cream for a certain amount of time, but she’s unsure what to do after this. Adam says if he has a bad day and thinks his psoriasis is more visible, it “will then trigger me to go home and start treating my skin”.
Russell talks about how he uses his topical steroid for psoriasis.
Russell talks about how he uses his topical steroid for psoriasis.
Age at interview: 20
Sex: Male
Age at diagnosis: 19
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Can you tell me a bit about how you decide how much steroid cream to use or for how long you use it?
I think they said don’t use it for more than two weeks straight without having a break of a few days. So I try to sort of adhere to that rule but I don’t think I ever did more than kind of two weeks, a couple of days off and then another two weeks and them maybe a day or two more but I think that’s pretty the max. Just because at the beginning you can see such a stark change very, very quickly and then again it’s just a case of personal judgement as to where I stopped seeing a change and then I thought oh I should probably give it a break. Yeh so basically when I stop seeing any kind of change.
And do you, how much would you put on a patch? Is that again sort of judgement?
Again yeh judgement, it always, it’s quite thick it’s more like a gel really than kind of like your average kind of your average Nivea or whatever. so it’s quite hard to rub in, in a sense. The first time I definitely put too much on so you’d be sat there with like really oily, gel-y hands and like, I’d sat there, I’d sit there for maybe ten or fifteen minutes and then I’d have to wipe some excess off because it’s you can't really sit down for hours and hours and hours and even then it’s probably still not going to sink in. so again just a case of judgement but, but quite thinly was, was probably best because it was a very, very thick yeh don’t think I have a better answer to that.
Adam worries about what the future might hold with the severity of his psoriasis and whether treatments, like steroid creams, will still be effective on his skin.
Adam worries about what the future might hold with the severity of his psoriasis and whether treatments, like steroid creams, will still be effective on his skin.
Age at interview: 24
Sex: Male
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I do worry about the day, and I do anticipate the day when nothing’s going to be able to help me. I don’t see, I follow kind of news of progress on psoriasis and stuff like that, and I don’t see us progressing anywhere from the treatments that we use now and treatments that we used twenty years ago. And so you see that other conditions are like moving really fast in terms of what, cos they’re prioritised or something like that. And, and this is something that’s really important to me. And I don’t feel like certain skin conditions are prioritised in terms of research or investment.
And I do track that sort of thing. And I’m worried that what I’ve used is, is not going to work on me soon, because things have stopped working on me in the past. And, or they’re not as, this, this ointment that I use, it used to, I remember when I used to put it on, it would literally, I would see an improvement by the end of the day. Like it was so good when I first got it. It was amazing. Now it takes like, if I was to put it on say today, it would take maybe like four days for the effects to kind of kick in. Which is still not too bad.
Most saw topical steroids as the first treatment choice for psoriasis. If these didn’t help, they knew other treatments might be offered – such as tacrolimus creams, dithranol topicals, phototherapy and systemic treatment. Lucy explains “it can be frustrating if your psoriasis is quite bad and you’re still getting creams and stuff and you maybe want something a bit stronger. But, I understand that they have to be thorough and professional and go through all the stages”.
As well as general difficulties with using topical treatments (time-consuming, messy, sticky, smelly, stains), there were other concerns about topical steroids. Very potent steroids have to be used carefully as they can sometimes cause problems like ‘rebound’ flares when treatment is stopped. Some young people we talked to worried about skin thinning and damage to the kidneys, but had not experienced these themselves. Lola stopped using steroid creams for a while out of concern but eventually went back to them. Adam’s doctors wanted him to stop using steroid creams as he had been on them a long time, but he didn’t want his psoriasis to flare-up. Sofia and Damini thought steroid creams had caused white patches on their skin (hyperpigmentation). Steven finds some steroid creams sting when he first uses them. Lucy says the steroid creams can irritate acne on her shoulders.
Ella says using topical steroids is an extra thing to fit in.
Ella says using topical steroids is an extra thing to fit in.
Age at interview: 16
Sex: Female
Age at diagnosis: 3
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Could I ask a bit about that in relation to your creams and how long it takes you to do those per day?
Yeah. It doesn’t take long at all but it's just-, it's like doing anything else really; it's like, it's just another thing added to it, like if I'm going to take off my make-up and then wash my face and then exfoliate my face, then moisturise and then put my creams on, you know it's a lot of things I have to think about every day. And then if I'm gonna wash my hair, like have a shower, that’s like another thing that I have to think about. And sometimes other things are more important like my social life or like school work and things like that. Sometimes-, or like I have ten minutes before I have to go to bed: shall I do ten minutes of work or ten minutes of relaxing or should I like do my skin routine? Like it's just different – what should I decide to do?
Louie finds there are lots of off-putting things about topical steroids. Some of these have an impact on school life for him.
Louie finds there are lots of off-putting things about topical steroids. Some of these have an impact on school life for him.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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I’ve had creams in the past that are like runny so when you put them on you have to give them time to dry of which when if you’re in the morning before you go to school or before you go to work if you’re a bit older – you don’t really have time to just put things on for take like 10 minutes to put things on and then 15 minutes to let it dry before you put on your work clothes or your school clothes because you’re not getting up three hours before you go to school or three hours before you go to work. Especially in my years, I’m past the years where I’m really raring to go to school, I’m at the sort of point where I’m just like ‘ahh, I’ve got to get out of bed, gotta go to school’. So I leave myself 45 minutes, half an hour, and I don’t really wanna be doing creams for 15 minutes of it then rushing to get to school, rushing to catch the bus, etcetera. And other things like creams that are sticky on your skin and they stick to your clothes and you’ve got like creams that do smell a little bit and you’ve got creams that leave like, like a shiny glaze over your skin. And you just think ‘well I can’t really explain if someone asks what that is because you don’t wanna go into detail’, like I said you don’t wanna bring attention to yourself. And so that’s another few things that doctors don’t realise and their alternatives may be a bit- a little bit better but they’re still-, most creams do take time and do take-, well, a lot of time in the morning and in the evenings when sometimes you just wanna come home and go to bed or get up in the morning and quickly go off to school.
Adam worries that using steroid cream on his face has damaged the skin.
Adam worries that using steroid cream on his face has damaged the skin.
Age at interview: 24
Sex: Male
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I think cos I’ve, applying hydrocortisone to my face. So, and I’ve applied like very thinly steroids to my face. So sometimes what I do, I don’t even know if it makes a difference, after I’ve put it on my body, you’ve then got, like you’re covered in ointment on your hands. But it’s very thin. I then, will then kind of go, like brush over my face with it. You know, cos it’s not like slapping it on. And then hydrocortisone, I generally apply that just around my nose and here. And I feel like I’ve got stretch marks around my nose from where I’ve, from where, from where I’ve been applying it. I feel like I’ve got stretch marks, kind of tiny ones and stuff like that. And I think that is a risk of- that you get from applying strong steroids ointments.
Doctors often told people to be careful about using steroid creams on their face, where the skin is thinner and more sensitive. Many had been prescribed a weaker steroid cream for this area and other sensitive parts (like the breasts) than for the rest of their body. Others, like Adam, used the same steroid cream but tended to apply less on the face.
Megan has different topical steroids for parts of her body. She also uses bath oils/emollients and a medicated shampoo.
Megan has different topical steroids for parts of her body. She also uses bath oils/emollients and a medicated shampoo.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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Did you say you’ve got different creams for different parts of the body?
Yeah and that was really confusing. Like, because I couldn’t use the cream that I had for my body on my face, because of it, I think it was steroid, or something, so I couldn’t use it on my face. So, I had to like label my creams of like ‘Body’, ‘Hair’, ‘Face’; and then I also had one that I needed to put in the bath, and I had one that I had to put on after the bath, and it was all really confusing. But we labelled them and kept them all together, so that we knew which one was which.
Louis talks about using steroid creams on his face.
Louis talks about using steroid creams on his face.
Age at interview: 21
Sex: Male
Age at diagnosis: 18
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None of them gave me side effects per se. The stronger steroids, you're not supposed to put on your face for a long time because they thin your skin. And a long time is sort of months at a time. So I was getting towards the stage where I would be at risk of actually damaging my skin from putting steroids on for too long. But there wasn't really another option at that point. So I sort of just took that risk and hoped for the best. And it did sort of go away. Especially from my face. It wasn't on my face for much more than about two or three weeks. So I didn't do myself any long term damage. But that was a worry, that I'd have to sort of keep chucking the stuff on and then it would eventually give me some problems. But it was that putting it on was much better than not putting it on. So you sort of had to go with it.
Adam has tried various topical treatments. One steroid cream was very effective at clearing up his psoriasis.
Adam has tried various topical treatments. One steroid cream was very effective at clearing up his psoriasis.
Age at interview: 24
Sex: Male
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He [the doctor] said, “Oh, like what about these patches on your face?” or something like that. And then he gave me like a tiny tube of ointment that he just kind of pulled off the shelf or something like that and, called, I think it’s Dermovate. Which I don’t think you can, actually should put on your face. But he said, “Well, use, like just put a bit of that on your face when you get home or something like that and see what happens.” And so I went home with it. And it was this tiny tube and I was able to get everything out of the tube and I put it all over my body. And I woke up the next morning and my psoriasis was gone. And I just, I just remember it being the happiest, kind of like one of the happiest days of my life. Cos all of a sudden like something worked. Again, things did work in the past and then they stopped working. Some of them worked again. And this ointment worked. And I’ve been on that ointment ever since. And it’s not as great now. I can put it on and it won’t be gone by tomorrow. But if I put it on, I probably put it on like now. So this is like, it’s been like two or three years since like this one was given to me.
Though it is important to be careful when using steroid creams, some found it frustrating if they felt that their doctor wouldn’t give them a strong enough topical steroid or consider other treatments. Simon was given a medicated shampoo when he was first diagnosed with scalp psoriasis and thinks a steroid treatment would have worked better.
Abbie’s tried lots of topical steroids without improvement. Her dermatologist wanted her to try more but Abbie pushed for phototherapy.
Abbie’s tried lots of topical steroids without improvement. Her dermatologist wanted her to try more but Abbie pushed for phototherapy.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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And what happened after that? Did they suggest different treatments than steroids?
Well it was when I mentioned to her that I said that I wasn’t gonna try creams, and that’s when she turned to me and said, "Well, obviously the phototherapy, it probably won't work; it doesn’t work on everybody and we'd always try these creams first before we do the phototherapy," but she put me forward it for anyway and I was like, "Well if you say it's not gonna work is there any point in me doing it?" She was, "Well it's up to you," which didn’t really help me. So I did it anyway and then I had to go and see her not long ago and I was like, "Look, it's all cleared now." So it was kind of like, 'Aha to you,' but the way she made me feel that day wasn’t like the most positive cos I've, I told her that I'd tried everything, like even when I got referred by my doctor over winter he'd looked at the previous, my previous medical – everything that I'd been given for it and it was pretty much all steroids that could have been given, or creams, I tried over the last ten years.
Which is why I got referred.
Adam has sometimes argued with GPs about psoriasis treatments.
Adam has sometimes argued with GPs about psoriasis treatments.
Age at interview: 24
Sex: Male
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Usually they do, so usually they do listen to what I have to say. They might go and double-check it or something like that. They, what was it? Like they would, they would tell you to steer away from ointments. And I would often have to fight and, I’d get their reasoning behind it. I’d get that kind of the, “Steroids, and it’s not good to pump your body with like, or apply all of these things to your body all the time.” So they do, they used to try and kind of like move me away to some of the softer treatments, especially if it like, if it cleared up a bit. And then I would go to, to the GP. I would kind of ask for like what I’d been used to and then they’d ask to see my skin. And then they would be like, “I think we should take it down a couple of notches because your skin’s looking all right at the moment.” And I would say, “No.” Because I’m like, “It might look all right at the moment. But when it’s gonna be bad I don’t want some shit kind of like thing that’s not gonna work. I want the strong stuff.” And I would have to almost fight them for it.
And I do get their reasoning behind it. And I think that’s when you have to like, there’s the, obviously for your body I get what they’re saying in terms of, “Okay, maybe you should try and, kind of like something weaker and see how that goes.” But in terms of my mind, my mentality and how it’s making me feel, I don’t care. I want the stuff that’s stronger. So, and they often do kind of bow to that cos they see that’s, kind of like you’re quite desperate.
I remember this one time actually, again I actually went GP’s. And there’s nothing against them or anything like that. But I remember they, so Dermovate, you’ve got like the cream and you’ve got the ointment. And the ointment works better. The cream’s better in terms of like, I don’t know why the cream’s better, for some things. But I know the ointment works faster. And I remember I kept asking for ointment m-, because it said it worked faster. And the GP was like, “No, the cream works faster.” And, and I was like, “No, the ointment does.” And, and it wasn’t until I went back to see a dermatologist again because this doctor sh-, for some reason wasn’t giving me ointment. And I went to see, no, it wasn’t a dermatologist, I went to see someone else. And I was just like, and they were like “Ah, do you not want the ointment? Cos it’s faster.” And I was like, “I knew it, I knew it was faster” and stuff like that. So, and then since then I’ve been back on the ointment.
Topical steroids helped some people maintain their skin after other psoriasis treatments had worked well. Megan and Abbie find steroid creams are enough to keep on top of their psoriasis since finishing other treatments (biological injections, phototherapy). Simon has nail psoriasis and thinks rubbing a liquid-y steroid treatment on his scalp helps by getting under his fingernails.
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