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Psoriasis (young people)

Psoriasis treatments: an overview of topical treatments

Topical treatments (applied to the skin) are one type of treatment for psoriasis. Sometimes this is the only treatment that people need to improve their skin condition. Everyone we talked to had used some kind of topical treatments for their psoriasis. Most had used several types, such as:
 

Simon gives an overview of his current routine for treating psoriasis with topical medicines.

Simon gives an overview of his current routine for treating psoriasis with topical medicines.

Age at interview: 22
Sex: Male
Age at diagnosis: 17
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When I have a shower I use Capasal. The doctor mentions, and when I’ve had it that you have it pretty much twice every shower session so you put it on and you rinse it off and about 10 minutes later or five minutes you put it back on and you rinse it off again and that’s fine. And when you get out and you first of all you use Sebco and you use that for you put that on and you can leave it on your scalp for about an hour, two hours at the most, and then you wash that off and then you move on to Betnovate. Now Betnovate isn’t as bad, of course there’s still that horrible smell of gasoline, so you do sort of smell that but you put that on and you, it’s basically it’s something you leave on until the next time you shower. And then after that for a, for my forehead I used Dovabet. Dovabet is another steroid based ointment. You put that on. It’s very greasy but it starts to calm down within about three to four hours. 
 

Louis had ‘post-viral psoriasis’ for about 6 weeks. He tried different leave-on emollients, steroid creams and soap substitutes.

Louis had ‘post-viral psoriasis’ for about 6 weeks. He tried different leave-on emollients, steroid creams and soap substitutes.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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I started out with a sort of over the counter hydrocortisone steroid cream, which was [sigh] it, it didn't really do a huge amount. It was quite soothing when I put it on, but I think that was effectively just because it was a cold cream, and the actual steroid takes a bit longer to kick in. And it didn't really do that much. So I tried that, and that was no luck with that. Then came back, and was given the-, an emollient cream, which was the one that's the sort of barrier to keep everything sort of moisturised. Which was good. It comes in this huge great big tubs, so you sort of just-, you sort of chuck it on. And that is quite good stuff. It doesn't sort of change anything about the actual psoriasis, but it does make everything a lot more-, a lot easier, because it reduces the itching, the pain and stuff. And I also got a sort of higher dose steroid. Which is fine-, so in theory it’s fine to put on arms, back, chest and stuff, but you're not really supposed to put it on your face for a long time. But the doctor said under the circumstance, you need something to put on your face, to sort of stop, stop the inflammation and things, so I put that on. And then when it still wasn't getting better, I went back, got another emollient cream, a type of like shower wash to use, because the soap that I was using to wash was irritating my skin. I'd come out of the shower and it'd be really painful, which is obviously not what you want. So I got a sort of moisturising shower wash thing. And then an even higher dose of steroids, which is pretty much the biggest that I was allowed to have. And that I put on three times a day, which was quite good stuff, but I did get through a huge amount of it. And all the prescriptions got quite expensive [laughs] because I had so many different things, so that was a bit annoying. 
Many said there’s a ‘progression’ of treatments for psoriasis over time and severity. Some people found they could usually keep their psoriasis ‘at bay’ with only emollients (moisturisers) but needed steroid creams or other active treatments for flare-ups. Stronger steroids or other treatments were sought if a flare-up continued for a long time or became worse. Russell saw steroid creams as the “first port of call”. Damini explains: “it was [steroid] creams first and they weren’t really working. And then they prescribed one of the stronger ones [steroid creams], that wasn’t working either, so then, last resort was phototherapy”.
 

Adam varies his topical treatments routines depending on the severity of his psoriasis and plans around his social life.

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Adam varies his topical treatments routines depending on the severity of his psoriasis and plans around his social life.

Age at interview: 24
Sex: Male
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So if it’s like flaring up more often than not or, then I would treat myself more. So I tend to, my, how I treat myself tends to be in response to the like psoriasis. So if it flares up, flares up more frequently I’ll treat myself more frequently. And if it flares up less then I’ll, I’ll treat it less. So at the moment I’m probably treating it like once a week, maybe once every fortnight. And that’s just like the bits that, that have come up in that time as well. So I’m not giving myself a full like coat of like ointment or something like that. So like one of those tubes of ointment, that I don’t know the size I’m describing, that can last me about six months. So, because they don’t really like you using a lot of it. But I’ve kind of got away with, “Keep, keep prescribing it to me because, because I use it quite sparingly. I use it quite kind of, quite occasionally.” But to where, like when I lived up in Scotland and it was a bad winter and I was a bit stressed and something like that, where I’d be treating it kind of almost every day as well.

So again if I knew I was staying over with someone, then I would prepare. And I would prepare in terms of like be, have, have treatments done beforehand. And I would, I would treat myself well enough. Or like if I say was staying there for like two nights, I wouldn’t bring my like treatment with me or something like that. But if I was staying there for longer, I would bring it. And then I would like plan to do the treatment at a time where it was suitable and I was being a bit, I could be a bit sly around it or something like that. Or if it was a night where “we had sex that night, that night, probably not gonna have sex tonight” or this night I’ll just say I’m a bit too tired. Go do the treatment and put a T-shirt on or something like that. Yeah, it would be, so it goes through my mind. Yeah, I plan it.
Young people often referred to their topical treatments as ‘creams’ and sometimes didn’t know what the active ingredient was in it. Other times, there was confusion about the types of topicals – for example some people mistook Protopic (tacrolimus) as a steroid.
 

Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.

Ella thinks doctors are sometimes unaware about the impracticalities of treatments in young people’s lives.

Age at interview: 16
Sex: Female
Age at diagnosis: 3
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I think one of the things that I've always had is the doctors going, "Right, here's your creams and you have to put them on twice a day, every day, you have to use these certain shampoos, these certain soaps and everything like that, and you have to use them." And I think while obviously they know exactly what they're talking about, it can be difficult to- to do exactly what they say, like I probably should be putting my creams on twice a day, every day, but I only put it on once a day because I literally don’t have the time in the morning to put them on in the morning, and if I did put them on in the morning then my skin would not feel very nice – like it would feel greasy especially on the places that I put it, especially on my face. If I was going to try and put my cream on and then put my make-up on, like I would have greasy skin for the rest of the day and that’s not something that I really want to deal with. So, I think doctors, while they do know what they're talking about, they should think about how the treatments are going to affect the patient's day-to-day life. Like some people don’t have the time to- to do like what the doctors have told them, twice-, if they have to do it twice a day – they don’t have time to do that.
Some people found topical treatments worked well for their psoriasis and were glad they didn’t need other treatments like phototherapy or systemic medicines. Others felt topical treatments didn’t work for them and were fed-up with going back to the doctors for new ones. Emollients and steroids were a big part of Abbie’s childhood: “that’s pretty much all I did, just creams, creams and creams”. Going back for more creams could be expensive for those who pay for their prescriptions. Even if a topical treatment didn’t work, Jack sometimes put off making another GP appointment because he didn’t feel assertive asking for something else.
 

The cost of trying prescribed topical treatments added up for Abbie.

The cost of trying prescribed topical treatments added up for Abbie.

Age at interview: 20
Sex: Female
Age at diagnosis: 10
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For most of it, cos I was a lot younger, it was OK I, cos I could get my prescriptions for free. But as I got older, when you're getting the, the prescriptions it does kind of add up depending on which ones you're having because, depending on how much they prescribe you, depending on how much you're having to use because of how much psoriasis you’ve got, also then depends on how often you're having to go back and get the repeat prescription and it does, the price builds up over time having to get it, which is why I did kind of just stop using any prescription and I'd buy just moisturisers, and I would try and see how that worked. But it's just, it's just a pain as well of having to go back to doctors and make sure you’d got that repeat prescription, or if it's not working, have to go back and try another cream, and if that doesn’t work you have to go back and get prescribed another cream in a few weeks and it just kind of builds up, and it's just back and forward, back and forward from the doctors.

Which can be an absolute pain over time.
Difficulties with using topical treatments for psoriasis

While there are some importance differences between topical treatment types, some shared issues were mentioned: 
  • being messy and time-consuming to apply and absorb into the skin
  • feeling greasy, thick or sticky – yet Hannah found the alternative was “when you don't have it on, you feel itchy and dry”
  • leaving a shine or residue on the skin
  • making the skin look redder or more ‘flushed’
  • getting on hair and making it greasy
  • staining clothes/bedding
  • unusual/unpleasant smelling
 

Topical treatments for psoriasis got on Louis’ clothes and bedding. He had to do more washing, though found clean clothes sometimes irritated his skin more.

Topical treatments for psoriasis got on Louis’ clothes and bedding. He had to do more washing, though found clean clothes sometimes irritated his skin more.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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What emollient does do, is it puts a sort of barrier between your skin and everything else. And it's quite greasy. It's like sort of paraffin sort of stuff, so it would get on all your clothes, it would get on your sheets, it would get on everything. So I used to have sort of a set sort of rota of t-shirts and jumpers and stuff that I didn't really care about, that I would effectively just allow to like get covered in this stuff, and then just leave it on there. Which was a bit grim, but it was sort of how I had to manage it. Yeah. Yeah.

Did the creams have a sort of impact in terms of like housework and sort of doing laundry of bed linen and so on?

Yeah. So I had to wash my sheets quite a lot. Because obviously if you're rolling about on them every night and you've got emollient all over you, they're going to get pretty, pretty bad pretty quickly. So what I did do, I was doing a lot of washing of sheets and clothes and stuff. But as I say, there comes a point that if anything, having clothes that are covered in cream is more soothing than having fresh clothes. So fresh clothes that come out of the washing machine, they would be, they'd be quite itchy, and they wouldn't have any, they wouldn't have much of a barrier on them. So it was almost more comfortable to be wearing clothes that had been covered in emollient, so you had sort of had a double barrier because then they sort of rubbed less. But yeah, so I'd be wearing like really like loose comfortable t-shirts and stuff like that were sort of covered in creams already. 
 

Sofia’s doctors wanted her to use steroid creams several times a week, but she found it too time-consuming and messy.

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Sofia’s doctors wanted her to use steroid creams several times a week, but she found it too time-consuming and messy.

Age at interview: 16
Sex: Female
Age at diagnosis: 6
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They said three times a week. Yeah, but I never used to like follow the guidelines. I used to do it like once or twice a month, that’s why it didn’t really have a good effect.

It’s like quite hard to handle especially on schooldays, cos I can’t wake up early and like shower. So that’s why I used to avoid using them during schooldays. So that’s why I only had like the weekends to use it.

Cos if I have to apply it every day like it stains a lot of my clothes and bed sheets and then I have to keep on changing my clothes and stuff. And like, once they’re stained they don’t go away, even after washing. So, yeah. Like it would be more, better if there was like a treatment, like you could have a cream plaster so it doesn’t stain clothes and stuff.
Where people had psoriasis on their body affected their use of topical treatments. Many people had help from family, friends and partners with applying topicals to patches they couldn’t see or reach, such as on the back. But, as Carys pointed out, “you can’t always have somebody there to help you”. Megan couldn’t go on a residential trip during primary school because she needed her mum’s help with applying topical treatments.
 

Louis is at university and lives away from his family. He had help from some of his housemates with applying topical treatments to his psoriasis.

Louis is at university and lives away from his family. He had help from some of his housemates with applying topical treatments to his psoriasis.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Did you ever need help applying any of the creams, for example, to parts of the body that are difficult to reach?

Yeah. So that was another- another housemate job that had to be done. I had to just hand someone a steroid cream and said, "I can't reach this bit [points to back], can you go for it?" So there was a sort of rota of people that had to do that for me. And obviously once it's on your hands it's really greasy and horrible, so it takes ages to get off. You have to wash it with like soap and hot water and stuff. So for lots of reasons it wasn't the best job to have to do. But no, they were quite good about it. Yeah. Unfortunately, the back was probably the most itchy bit. And trying to get- get cream all over your back [gestures reaching towards back] was quite difficult, so they were roped in to do that quite often. But no, they did alright, they were quite good.
The skin on the scalp is a common place to get psoriasis and topical treatments for this area can have particular problems. Medical treatments for scalp psoriasis include leave-in ointments/creams as well as special shampoos (washed out). People with long hair found it tricky to get the treatment directly onto their scalp. Some people said overnight scalp treatments can be especially unpleasant with an off-putting smell and getting on pyjamas and bedding, which could affect their sleep. Steven experiments with ways to keep topical medications on his scalp overnight, but admits some are unusual such as making ‘hats’ out of tinfoil.
 

Steven thinks it’s easier to apply treatments to his scalp with shorter hair, but doesn’t want this to determine his look too much.

Steven thinks it’s easier to apply treatments to his scalp with shorter hair, but doesn’t want this to determine his look too much.

Age at interview: 22
Sex: Male
Age at diagnosis: 14
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It has affected my haircuts a little bit, I suppose. Because I tend, from having the treatment like that, from having, applying treatment I have it cut a bit shorter to try like get it easier. In fact, I should really go back and have it cut again. I didn't have it cut short enough last time. But then I wouldn't have like skin haircut, like all off, like bald, sort of thing. But the nurse did say to me like, “Oh that’s the best way you’ll get it to your scalp – just go have your hair all cut off”. I was like, ‘awrr, okay’. So, yeah. 

Could you say a little bit about why you wouldn't go for that haircut?

Doesn't suit me. That’s like the number one thing, like it looks horrible. I had it cut really short a few years ago. It wasn’t good. I suppose if things were really bad and we were, I was having light therapy or something like that and she said to me, the nurse said to me, “You’d have it cut really short then”. Then I would do. I’d like push that aside. Everyone says, it’s quite a big thing – your hair and having it cut short and y’know. And I think if I had to and it would really helped then yeah. But at the moment, I haven't done it because it’s not a help and it looks horrible if I have it done, so. It doesn't suit me [laughs]. 
Many found topical treatments became a big part of their lives. Damini says she tends to “plan my day around my creams” and there have been times when Adam felt he had become “almost OCD” about his. Having a routine for psoriasis topical treatments can be hard. Applying them can be time-consuming, especially if the person has lots of small plaques. Adam says he tends to “slap it [steroid cream] on” as it’s not easy to see each small patch of guttate psoriasis. Simon worried about losing his routine of using topical treatments when he moved out of his family home for the first time. He tried hard to “keep a definite schedule going” around work shifts.
 

Lola finds applying topical treatments time-consuming. She sometimes prioritises areas to focus on, such as her face.

Lola finds applying topical treatments time-consuming. She sometimes prioritises areas to focus on, such as her face.

Age at interview: 17
Sex: Female
Age at diagnosis: 14
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It takes me for ages now to ever-, twice a day I have to put cream on and sometimes if I’m going out, staying at a friends or I’ve got a really busy day then I don’t always have time to put all this cream on because it’s all over my body, and it’s not necessarily concentrated on one area. I spend for ages having to find it, remember where all these spots are to reach and put creams on, different creams, wash my hands between the creams, that I don’t always have the time to do it. And if I don’t have the time to do it then it get-, I notice because if I’m run down or I’ve had a late night then it easily impacts it, and it will get worse. And that’s annoying is that if I’m not regular with the cream that I kind of have to not start again but I’ve taken a step back. But like sometimes I don’t have the time to do it, to do the cream twice a day, or to do all my body like necessarily, I might only have the time just to do my face cos I want to kind of get rid of the psoriasis on my face or my arms. But I might not be able to do my back or my shoulders. So it’s annoying that you have to kind of be really regular with it and it’s really time consuming.

And that’s kind of the effect that I’m noticing now, is that before school it sometimes means I don’t get to eat breakfast or late at night when I’m really tired I can’t be bothered to stand in front of a mirror and like try and find cream, like get my cream to put on my spots.

So it’s the time at the moment is really annoying me.
 

Jack finds it easier to have a routine with using topical treatments since finishing university and starting a job.

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Jack finds it easier to have a routine with using topical treatments since finishing university and starting a job.

Age at interview: 24
Sex: Male
Age at diagnosis: 20
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And what was that cream like to use, the first steroid one?

Yeah, it was mixed. I think, partly at the time because I was in my first year at university so my life was kinda [laughs] kind of revolved around doing student sort of things, like socialising and that kind of thing. I probably sort of half-ignored it and half would spend a few days applying it and then sort of give up or forget and or that kind of thing, so-. It’s, it was difficult to say how much [laugh] really of an effect it had.

I think it probably didn’t help, the fact that I didn’t have, have any routine and was going, going out a lot and things like that so I kind of didn’t really care, if that makes sense, too much about, about my skin. But now, obviously, I’m cos I’m working, I think it’s more, I get home every day at a certain time. But yeah, especially well, what I’m using at the moment is, is quite strong so I do only mean to put it on once a day so it’s easy really to be honest. Just put a bit on before I go to bed and that’s, yeah, I think it’s not too difficult I think when you do have that routine in your day already.
Waiting for creams to dry on the skin can stop the person from doing other things. Some people said there’s not enough time to do treatments before classes or work. Megan does her homework before applying topicals, otherwise the paper gets greasy. Zara has special silk socks to wear overnight to keep the topical treatments on her feet.
 

Megan wears bandages at night to help the topical treatments stay on her skin. She thinks it makes her look like “an Egyptian mummy”.

Megan wears bandages at night to help the topical treatments stay on her skin. She thinks it makes her look like “an Egyptian mummy”.

Age at interview: 16
Sex: Female
Age at diagnosis: 7
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And then, before I'd go to bed, I'd put my cream all over my body, wrap myself up in bandages, and then wait for it to soak in just a little bit, so that when I laid down it didn’t like go all soggy, and the bandages get really wet. So, I like would walk around a bit, probably pacing around, and wait for it to like just soak in a bit, enough so that it wouldn’t get wet, and then go to bed. And then wake up in the morning, take it all off and go again.

How much sort of time do you think your routine with the creams and the bandages would take you?

It took me quite a while. It took like, I think putting the bandages on took like half an hour to an hour, because I had to make sure that I was using the right cream; and then making sure that the bandage wouldn’t affect the cream, so I had to make sure I put it on really carefully, and make sure the cream was still spread out.

And then taking it off in the morning was quite simple, because the cream had dried overnight, so it was quite simple just to take it off in the morning.
Another concern for some people was finding places to comfortably put on their topical treatments. Many said they don’t like others seeing them apply their creams, which was an issue especially for those with roommates, housemates and partners. Louis sometimes re-applied his creams (emollients and steroids) in the toilets during the day when out of the house. His housemates sometimes brought his treatments to him if he had left them at home.
 

Being cold when putting on topical treatments was an issue for Adam when he lived in student accommodation.

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Being cold when putting on topical treatments was an issue for Adam when he lived in student accommodation.

Age at interview: 24
Sex: Male
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Applying ointment’s not fun when it’s really cold in the winter. And I used to live in student, like with students and it used to be dreadful like when people wouldn’t put the heating on. And I had to sometimes sit naked and apply an ointment to my body. And I used to hate it, having to do that, because I’d be freezing cold in this flat. And that wasn’t very enjoyable. And I’d sometimes put it off because of that. And then you could be quite uncomfortable as well with an ointment on. Like when you, and then cos it was so cold I’d have to put like pyjamas on or something like that, get into bed, and it wouldn’t be the most comfortable sleep. And once I was asleep it was fine. But it was getting to sleep, you could feel it all over you.

And, but, so that wasn’t always great, that kind of routine when I kind of like couldn’t afford heating. Or, or you had to, the politics of kind of like I wanted the heating on and part. And also like, I used to, the people that I used to live with like having a warm flat was important to me because of my skin. But I, and I don’t think I, well, I d-, well, again I didn’t wanna be like we’ve got all put the heating on like today unless they, like I just wanted it on occasionally. Because I’d be in a really cold flat and I know that the cold’s not good for my skin and it makes it break out. And then it also means that I don’t wanna treat my skin so easily because it’s a really uncomfortable experience. So that wasn’t so great. But then now I live with my parents where it’s like warm all the time, where if I want to I can like walk around in like just my tracksuit bottoms and like no T-shirt on. And if I thought, “I’d better treat my skin” or something like that, I can go up and put it on and just go and sit down and no, no one will batter an eyelid or anything like that. So it means I’m probably more active in terms of looking after my skin than I was when I lived in this like freezing cold flat where it was just like, one, it was bad for my skin in the first place and, two, it was then very uncomfortable to treat my bad skin.
Getting through creams quickly and running out was a worry for some people. Adam found it stressful running out of creams whilst at university. It meant he had to make a doctor appointment and usually ended up seeing a different GP each time. Hannah says discontinued topical treatments can be an issue too – she was prescribed a scalp solution but the pharmacy no longer stocked it.
 

Louis found it expensive trying different topical treatments. His GP prescribed him a bigger quantity of one so that he wouldn’t have to pay prescription costs multiple times.

Louis found it expensive trying different topical treatments. His GP prescribed him a bigger quantity of one so that he wouldn’t have to pay prescription costs multiple times.

Age at interview: 21
Sex: Male
Age at diagnosis: 18
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Could I ask a bit about prescription costs? Because I know you mentioned there were quite a few different products you ended up using?

Yeah. Yeah. So the, when I first went in, it was just the one. Then I went in again and it was two more. Then I went in again and it was another two, and I thought ‘this is-, this is now just quite a lot of money’. And so I asked the doctor, "If this doesn't look like it's going to go away soon, can you give me a prescription for basically a shed load of what you're giving me? So I can just sit-, like just have that, and not have to keep coming back and then getting a new prescription?" And he was fine about that, he'd happily give me several weeks' worth at a time. So I could get myself down to Boots and then just stock up on these big piles of different creams and things. But it did, it, prescription costs do- they do add up quite quickly. And as I say, the first one, fine. You take it. The second two, alright, hopefully this will do it. And then by the time I came back the third time and I'd already put- I don't know what it is- three, so twenty four quid, down prescription. And I was being given two more things to try, I thought 'this is-, this isn't great.' So, so yeah. But I didn't mind asking my GP, sort of explaining, "This is- obviously this is a lot of prescriptions, I'm not rolling in cash at the moment, could you just- could you make sure that I get the most I can get out of my prescription?" So he'd give me a big doses and things like that. I suppose it's one of those things that you just-, you've got to take on the chin. I needed the creams I was being given, so.
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