Phototherapy treatment uses ultraviolet light (UV) to slow down skin cell production. A course of treatment involves multiple sessions, takes place in a hospital and is managed by a dermatologist. It can be an effective treatment for some types of psoriasis that are too widespread for topical treatments alone.
Many of the young people we talked to had phototherapy. Some people had more than one course of phototherapy at different times, although there is a limit to how many courses a person can have without damaging their skin. Hannah heard that for her skin tone the limit was four courses. Adam worries about ‘using up’ treatment options for psoriasis and having none left to try. Ella and Lola had heard of phototherapy and thought they might consider it in the future.
Dr McPherson talks about the benefits of sunlight and the use of phototherapy for psoriasis.
Dr McPherson talks about the benefits of sunlight and the use of phototherapy for psoriasis.
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So lots of people will recognise their psoriasis or their skin is better in the summer, if they do expose their skin. But unfortunately lots of people with psoriasis won't feel able to expose their skin, you know, for reasons of kind of shame or stigmatisation. So actually we know that a lot of people with psoriasis are actually vitamin D deficient because they won't- even though it's helpful for them to, you know, have sunlight on their skin, they won't. Sunlight is a, is a powerful anti-inflammatory, and it seems to work particularly on the type of inflammation you get in psoriasis. And light treatment uses that fact, but we have the, the wavelength of light we use is the sort of one that's been shown by some people in America to be the most effective to reduce inflammation. And the least sort of risk long term with skin cancer. So we use a particular wave of light called narrowband UVB. Which is, that's why the light boxes are particularly designed to be used for patients with psoriasis, rather than just going on a sun bed or going sort of sun bathing. But it does mean you have to come to the department, and you have to come regularly, to have the sort of light sort of dose built up over time.
Adam talks about his experiences of having phototherapy.
Adam talks about his experiences of having phototherapy.
Age at interview: 24
Sex: Male
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Could you tell me a bit more about what the UV treatment was like?
Yeah, it was funny, it was strange. It was, I can’t really explain it. I remember being very excited to have it. I remember initially being nervous. I’d heard, again I’d heard different like takes on it from different GPs. Once one told me that you can only have it three times in your life. And I was just like, “Oh, my God, I’m gonna use them all up and then...” something like that. Another one said, “No, it doesn’t really matter” or something like that. “It just depends on your needs and stuff like that and your skin.” I’ve got really fair skin. So there are concerns about me using UV treatment in general. So I remember like, well, you’d go in and then you would sit like in your waiting area and stuff like that. You’d inform the nurses that you were there. The nurses were brilliant. And you’d all be in the waiting area. You would sit and there’s people who also have psoriasis or some form of skin condition that’s there. And then you’d get called in. You’d go behind your curtain where your UV pod thing is, or whatever they’re called. You would get undressed. As a man you’d have to put a sock over your, your penis, cos obviously your skin’s very thin around there. So that couldn’t be exposed. You’d put goggles on to cover your eyes. Some people had to put masks on their face as well. And I had really small doses of light because my skin was really fair. So I mean my first time, I think I went and you have to get all undressed and everything like that.
And I think I was in there for like 15 seconds and then I went out. And then I was doing that, and then it slowly increased. And I think it got to like 40 seconds or something like that being there.
Most of the people we talked to had UVB phototherapy (using ultraviolet B). Lucy and Zara had also tried PUVA phototherapy: when a treatment containing psoralens is put on the skin (or, sometimes, swallowed as a tablet) to make the skin more sensitive to light before exposure to ultraviolet A light. Lucy explains “you go in the bath first with a certain thing on that makes your skin more sensitive to the light and then go in [the light box]”. Zara remembers there were sometimes other dermatology patients in the room when she had the psoralen ‘gel’ applied to the psoriasis on her feet.
What’s it like having phototherapy?
Most people didn’t know what to expect when they first heard about phototherapy. Steven and Adam were nervous at first. Zara said having phototherapy doesn’t hurt or feel warm and it’s okay to move a bit rather than stay completely still. The ‘dose’ of phototherapy (number of seconds of ultraviolet light) is gradually increased over sessions. Megan had three weeks of phototherapy with a session every other day: starting at five seconds of UVB which increased by two seconds each time and then gradually back down to five seconds. Everyone wore protective eye glasses/goggles and underwear/a cloth to cover their genitals, as these areas of the body are very sensitive to ultraviolet light. Some people avoided using certain cosmetic or perfumed products on the days of their phototherapy sessions – Steven didn’t use aftershave or deodorant as he says it “burns off” in the treatment.
Megan felt excited about going for phototherapy treatment, but there were downsides too.
Megan felt excited about going for phototherapy treatment, but there were downsides too.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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What about when you had to go to the hospital for the phototherapy treatments?
I have to wake up really early, cos my mum and dad don’t drive. So, we had to get the bus every other day – so it was Monday, Wednesday and Friday. And so I'd wake up really early and be prepared, but I always got excited, I don’t know why, like I felt like, 'Oh I'm going into the hospital today,' and I got really excited about it, cos I liked the fact of going into a box, I don’t know why, with like ultra-violet light, I liked that. So, I got really excited like every time I had it, and I was like up, ready. We'd go to the hospital, and I'd like have it done, and then I couldn’t go out in the sun afterwards because it would burn my skin, so I'd kind of just hide inside.
Lucy didn’t like going to phototherapy without make-up on in the mornings.
Lucy didn’t like going to phototherapy without make-up on in the mornings.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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I had my first course when I was at sixth form and I would go about half seven on a morning, I’d get the bus to the hospital, which is quite near me anyway. Go on a morning and then go to college. But then, you can’t wear any deodorant or perfume or anything or make-up in there. So I always hated going on the bus with no make-up on [laughs]. It was awful. And then I’d get in and then put all my make-up back on in the hospital toilets and sometimes I’d be late for my first lesson and stuff. And there’s a bit of a faff on. But, I saw such a difference in my skin. It was, it was amazing. It was like, it was the first thing that really, really worked. And I loved it. And it warmed me right up on a morning [laughs] so that was nice.
Lisa talks about her experience of phototherapy.
Lisa talks about her experience of phototherapy.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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And then could you tell me a bit about the light therapy treatment and how you had to do that treatment?
Yeah, I had to go three times a week normally Monday, Wednesday and Friday. In the morning, before school you’d just be in like a room where you’ve got machines around you. It’s a bit like a stand up light bed. And you’d wear goggles because it was ultraviolet lights. And you’d stand in your underwear so that you can get your skin and you’d be in there for about ten minutes and you’d do that three times a week until it helps.
Did you ever have any sunburn or side effects from the light therapy?
No, no, because they because I was young they didn’t give me a very high dose. So, it was gradual.
Some described the phototherapy room or ‘light box’ as looking a bit like a stand-up sunbed. Lucy had been to two hospitals for different courses of phototherapy and compared them: the most recent one had bigger phototherapy treatment rooms and a separate changing room. Adam, Zara, Abbie and Megan said the medical professionals they saw for phototherapy were friendly. Sometimes there were other people with psoriasis in the waiting room before they went in to the treatment room for their phototherapy. Zara had only seen adults, rather than other young people, at her dermatologist’s waiting room.
Adam found it a positive experience seeing others with psoriasis in the waiting room when he was having phototherapy treatment.
Adam found it a positive experience seeing others with psoriasis in the waiting room when he was having phototherapy treatment.
Age at interview: 24
Sex: Male
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The experience of kind of having the treatment was fine. It was quite, almost nice to be around other people that were g-, were going through it. I remember seeing this young girl. Again this would kind of, sort of try to put it into perspective. Do you know what I mean? I’m so conscious of myself. And she had really bad, I think it was psoriasis down one side of her face. And, and just seeing her, and I just remember being really cheered up by her because she was like so rowdy and so kind of confident and cocky. And she used to bring her friends with her from school. And I just remember thinking, “You’re amazing” this girl. And I’m sitting here and like I’ve got a few patches on my back or something like that. Well, it is worse than that and it is, and it means a lot to me. But I just remem-, and then this girl used to bring her, all her like schoolmates with her cos she didn’t want to go on her own. Or cos, do you know what I mean? Cos it was boring for her. Poor girl had to go like and stuff like that. And she just seemed like, so kind of like, “Yeah, whatever.” So kind of, “It didn’t matter” about it.
I remember seeing this guy that I really fancied there and, and being quite happy that he had psoriasis, cos I was just like thinking, “It’s not just me.” And, and so, cos you just assume that kind of like everyone who’s like ugly has like a bad skin condition. I know it’s terrible to say and really judgemental. But someone that like, it was quite nice to see that someone, ha-had I seen them on the street, not knowing that he’d come to that clinic, I would’ve been really envious and angry almost at him at points. Being like, “Fuck it. Like probably got perfect skin, perfect life” or something like that. And, or if I saw him in a bar. Kind of being like “Oh I’ve got stupid fucking, look at this guy. I wish I was like him.” And that sort of guy was sat next to me, also undergoing what I was going. So that kind of almost brought people like together in the same space and we were all just all different walks of life. And so it was quite nice in that sense to go.
Most people went for phototherapy 2-3 times a week. The period over which they did this varied, from two and a half weeks to four months. This became tiring over time for some. Megan used public transport to get to and from her phototherapy sessions, which became “stressful” and “repetitive” with “long days”.
Abbie found phototherapy helped her skin but going for sessions was tiring.
Abbie found phototherapy helped her skin but going for sessions was tiring.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Like at first it's like I'm only coming up here and the, I think my first treatment was like forty seconds that I was stood in the sunbed and it's like am I actually drive, cos I had to drive twenty minutes to the local hospital. Twice a week is a bit long, and it was ‘am I really coming up here for one minute or whatever to stand in-’, but over time it did get to about four minutes which is a little bit longer, but a lot of the appointments as well cos they were always morning appointments; like it just tired me out cos every time it was… worked out on my days off whenever I was on a late shift, so therefore I had the morning off, so I had to be up early to be able to drive up to go and do it. So it did kind of exhaust me over time especially with being busy at work and just made me so tired, but at the same time it was helping me so it was a bit of swings and roundabouts to, 'I want to go but I don’t want to go cos I'm tired,' but yeah it helped.
Lucy’s heard of a commercial light treatment. She thought this could save time and hassle travelling for treatment, but worried about misuse.
Lucy’s heard of a commercial light treatment. She thought this could save time and hassle travelling for treatment, but worried about misuse.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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What about potential treatments for the future, if there is any that you are considering?
There was somebody that I met at this group tries out new treatments and there is this thing being developed by Philips, which I’m a bit wary about, cos Philips is commercial and it does, you know, commercial things. So it’s not medicinal. And it’s sort of like a belt with a UV light on it. And I was asked to try it out, but it only really works on arms and legs and because the majority of my psoriasis is on like my trunk area, I couldn’t really use it. But that’d be interesting to use.
But it’d be good if there was some way of having light therapy in your home. But then, it would be abused, I suppose, cos it can be dangerous and you can’t do it long term. But I think that’d be so helpful, cos it can be a bit annoying having to go first thing on a morning like twice or three times a week. But for me, that’s the most helpful thing. So it would great having something in the house that you could use that for.
A practical issue is fitting phototherapy sessions around school and work. Although the actual treatment only took seconds/minutes, the trip to the hospital and wait could be time-consuming. Zara, Louie and Hannah missed out on classes. Damini timed her phototherapy to start in the summer holidays so she didn’t need time off school. Louie’s parents work full-time which made it tricky taking him to each appointment, so his grandparents often helped (see family). Some people liked that the dermatology staff tried hard to fit around their schedules.
Louie missed out on school classes when having phototherapy.
Louie missed out on school classes when having phototherapy.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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Did you have to take any time out from school to get to your appointments?
Yeah at some points, for example some of my light therapy was during say it was 2 o’clock and I finish at 3.15 so I would have to take the last period off to get there and get back and etcetera so I wouldn’t have to-, it wouldn’t really be a thing for me to come back in. But if you are, if you do have psoriasis and you look at it ‘oh I’m gonna get time off school, that’s great’, do not look at it like that, you need to be at school because I have missed out on quite a lot of learning because of it and now I’m feeling it a bit now because I’m having to revise and study a little bit harder than everyone else. But if you, if you do have the opportunity to do it outside of school hours go to the appointment or book appointments at that time because it is helpful to you and it should be beneficial to you. And yeah, so I did miss quite a lot of school – not a considerable amount but a little bit of school which in important years is- a little bit is worth a lot. And so I did miss a little bit like I missed afternoons, I missed first periods and I missed first like registration, I missed assemblies and stuff like that. But yeah, so I did miss quite a decent amount of school.
Adam’s phototherapy sessions were timed to fit around his lectures.
Adam’s phototherapy sessions were timed to fit around his lectures.
Age at interview: 24
Sex: Male
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So at the time I had UV it was really convenient for me that it was - I remember, we timed it quite well, how we planned it. We did it in the afternoon cos obviously they sort of knew I was a student, so they were like, “We won’t give you a 9 am appointment.” We did it so it coincided with the end of two of my lectures a week. So it was when I’d finished for the day and it would be me walking home for the day. So it was really like, obviously it was a bit of an inconvenience cos you have to do it twice a week, but like the impact was limited as much as possible. So it wasn’t too bad. But I know it would be like a massive inconvenience if I went through it again.
Carys’ phototherapy sessions were scheduled around her work shifts.
Carys’ phototherapy sessions were scheduled around her work shifts.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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They were so accommodating of the fact that I worked shifts. I was a little bit more difficult because I’m so pale skinned, I couldn’t do two consecutive days whereas other people can. But I couldn’t so they, but they were really, really accommodating of my shifts and so was my work, because I work at the hospital I would pop off my shifts and just go get it and then come back. If I was on night shifts they would either give me the first appointment of the day or the last appointment of the day to try and make it easier for me to get there and back and not have to break up my sleep just to go get a five minute session, cos it’s so quick, they were like, “Seems a bit unfair to make you come all the way.” But, like I say, it was, work were really good with it, cos they would just let me off. If I was on day shifts I would just pop off the ward. Everyone was just going, “We have to work and you’re popping off for a sun bed.”
[Laughs]
So it was, like I say, I can’t fault my work for the way they helped me and like I say, but it was, it was alright. And it was, like I say, it was dead quick, dead easy and by the end like I say, they just-, if I was ever late, because I was on shift or whatnot they were really good about it, so.
Deciding to try phototherapy
Everyone we spoke to who had tried phototherapy had been referred by their GP or dermatologist and their treatments took place at a hospital. Most had tried other psoriasis treatments before phototherapy, like steroids creams. An exception is Carys whose psoriasis was so extensive when she was diagnosed that her dermatologist said topical treatments wouldn’t work and she would need phototherapy. Even if the young person was already seeing a dermatologist, there could be a wait of a few weeks to months before their phototherapy treatment started.
Occupational Health at Carys’ workplace helped her see a dermatologist quicker, as her psoriasis was impacting on her job as a nurse.
Occupational Health at Carys’ workplace helped her see a dermatologist quicker, as her psoriasis was impacting on her job as a nurse.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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I was referred to dermatology at the hospital and I was seen within a few weeks, so the process was a lot quicker going through Occupational Health which surprised me, actually. Didn’t expect it to [laughs].
Do you know how long you would have had to have waited otherwise to see a dermatologist?
I think my appointment probably came through about six weeks after the original appointment in the community with dermatologists. Cos they, yeah, they said it wouldn’t be till the Christmas and the New Year or actually yeah, cos I saw on Facebook, well you know, you ‘go back in time’ thing. And it said-, I’d put a status on saying that I needed phototherapy but that I wouldn’t get it till the New Year and that was this week, so it was probably a good six weeks that I was probably waiting for the appointment. And I’d got the letter asking me to go when I, the day after I’d had my first session of phototherapy at the hospital so it was quite a wait, so I think it’s one of those things that’s probably in quite high demand but not a lot of people can do it.
Some people wanted to try phototherapy earlier. Zara’s mum had suggested phototherapy when she was younger but the doctors “always said there was something different to try” first. Steven was offered phototherapy by his dermatologist when he met the eligibility criteria based on severity/coverage. He thinks doctors also take into account the impacts on a person emotionally and socially (on hobbies, work life, relationships and friendships).
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.
Carys weighed up the risks and benefits before deciding to try phototherapy.
Carys weighed up the risks and benefits before deciding to try phototherapy.
Age at interview: 23
Sex: Female
Age at diagnosis: 22
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It’s one of those things that when they told you about side effects, you’re like ‘oh no’, cos I never use sun beds or anything like that. So, to be told, you know, “You are increasing your risk of skin cancer.” That was not a nice thing. But when, you know, you have to listen to the facts and use your sensible head at that point and kind of weigh out the pros and the cons and I thought ‘well, there’s a chance that psoriasis may never come back’. And if it was to come back that I would spot the plaque and I would be able to say, “Right, I need to start my treatment again.” So I was like ‘well I better just, just do it.’
Adam declined phototherapy when he was first offered as he didn’t want to stop using topical steroids.
Adam declined phototherapy when he was first offered as he didn’t want to stop using topical steroids.
Age at interview: 24
Sex: Male
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So I was using this ointment and then kind of, yeah the ointment’s been pretty great. I still would have like flare-ups and it’s always affected my confidence. And it kind of got to a point where the ointment, they wanted me to come off the ointment because it’s one of those things. You shouldn’t be putting your steroids on your skin all the time. I was just like, “I couldn’t give two shits. I’m gonna put, this is, like I’m not coming off it.” And then they said, “Well, why don’t you go for UV treatment?” And then I said, “I’m not.” Because you have to come off it like before UV treatment or something like that. Or the positive effects that UV treatment will have been taken away, you’ve got to wait weeks or something before you see any kind of direct impact. And I was like, “I’m not, this is how much it affects me. I’m not having six weeks’ window where I’m gonna have bad skin just so some UV light just kind of makes it better for like however many months” or something like that.
And then end up, realising that this particular ointment you’re allowed to use while having UV treatment. A lot of the others you weren’t allowed to use. So I was actually on an ointment that you were able to. So I then agreed to have UV treatment. And then I weaned myself off the ointment as you could see the effects change from UV treatment.
Side effects of phototherapy
A few people had side effects from phototherapy, such as burns. Gradually increasing the ‘doses’ (seconds) of UV helps limit the chances of this happening. Some people’s skins are more sensitive than others though. Carys had a ‘test’ patch done which went red. Louie sometimes felt sick after phototherapy which he thought was because he’s “fair skinned” and of “Irish descent”. Going out in the sun after phototherapy treatment increases the chances of sunburn. Megan’s mum called her school after each session to remind them that she should stay indoors.
Abbie noticed her skin became pink after her phototherapy sessions increased, especially when she had been working outdoors. She found using after-sun helped.
Abbie noticed her skin became pink after her phototherapy sessions increased, especially when she had been working outdoors. She found using after-sun helped.
Age at interview: 20
Sex: Female
Age at diagnosis: 10
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Usually afterwards, especially once you’ve, your dosage has gone up so you're going longer and you can start to feel the heat especially in there. I do go slightly pink in places mostly in my face and my arms and maybe my tummy especially when, whilst I was doing it recently we've had the nice hot weather, so working outside most days going out I'd end up by the end of the evening with a completely pink face feeling ridiculously hot because I've just gone up in treatment; I've been out in the sun so it's just making sure that always put on sun cream afterwards if I was gonna be on it, out in the sun, just to kind of prevent anything else happening, but it was only really go pink for a few hours.
Adam’s face was once burnt from phototherapy, which drew unwanted attention.
Adam’s face was once burnt from phototherapy, which drew unwanted attention.
Age at interview: 24
Sex: Male
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So, and the experience was fine. I got burnt once by it on my face. And since then, they had to give me a mask. I didn’t want to, they wanted me to use masks from the beginning because my skin being so fair and, on my face. And I didn’t want to because of I’ve got psoriasis on my face. Just tiny bits around my nose and stuff like that, but I wanted them to go away. And it did go away, and I was so happy. And then I got burnt. And it was so bad because my face went like purple almost. And I had the goggles on as well. And it was like, kind of like four days. And I had to go to, I worked in a bar at the time and I had to go to work and people were like, “Oh, my God, like what’s happened to you?”
The increased risk of skin cancer worried some people. Damini learnt about this in a letter from the hospital but her doctors reassured her that the number of UVB phototherapy sessions she was having wouldn’t be a big risk. Increased risks of skin cancer are particularly a concern with PUVA treatment, as the ultraviolet A light goes deeper into the skin.
Lucy talks about the risks of skin damage from phototherapy, sunbathing and using tanning booths.
Lucy talks about the risks of skin damage from phototherapy, sunbathing and using tanning booths.
Age at interview: 24
Sex: Female
Age at diagnosis: 11
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If I have light therapy, I’ll make sure I wear the goggles and make sure I wear you know, appropriate underwear and things so I’m not completely exposing my whole body to it, cos it can be quite powerful. And then, similarly, when I’m out in the sun, although the sun’s fantastic for it, I’ll always, always wear sun cream, a high factor sun cream, cos it’s so important. So it’s just, it’s knowing, it’s like getting the balance right, really, because it’s so easy, especially when I’m feeling down about my skin to put loads and loads of cream on or to, you know, go out in the sun with no sun cream on. Even go on a sunbed. At times, I did go on sun beds, but I’ve stopped doing that, cos it, in low doses it does help. But it’s, it’s not worth getting into the habit.
And, I mean, I said earlier about when I was at school I’d had some light therapy and then I wanted some more, so I thought, ‘oh, I’ll go on the sun beds’, but like no way would I go on the sun beds again, cos it’s just, it’s not worth it. I only ever went on for like two minutes at a time or three minutes, y’know some people go on for ages to get a tan. And I was never interested in getting a tan. I was interested in it for my skin. But the light therapy at the hospital is so much safer that, ask for that. If you have psoriasis ask for that. Don’t go on the sun beds, cos they’re too dangerous. That was the mistake I made. But yeah, definitely the best treatment I’ve had, the light therapy.
What happened with the tanning beds? Did you have sort of a bad experience or was it more just concerns?
Just concerns, really. I had sort of like a card where I bought 25 at once. I’ve never used them all [laughs]. But I would go in once a week for three minutes a week. Something really small like that. But then, I’d been going for a few weeks and I thought well, I’ll have six minutes this week and then I burnt. And I thought, oh god, if these are burning my skin, they’re so powerful, like y’know, I’m not sure. I don’t, I don’t want to really risk it. And then, I’ve read so many stories about people who are getting skin cancer from sun beds and it’s just not worth it. And if you want a tan, get fake tan. I mean, I’m quite pale anyway, so I don’t really fake tan. But I’d rather do that than go on the sun beds now, just cos of the risks involved. There are so many risks. And I wouldn’t risk it.
Dr McPherson discusses the risks associated with phototherapy treatment.
Dr McPherson discusses the risks associated with phototherapy treatment.
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So there are risks to light treatment. You know, no treatment is without risks, unfortunately, and that's why you always have to be very careful when you're dealing with a condition which is likely to be to some extent life-long. That you don't want to use treatments that give you higher risks than the benefits you get. And that's why using things that suppress your immune system long term, the biological drugs, you know, all these things which can be very helpful with psoriasis, we just have to be careful about how young you start them, how long you're on them for. And we have to really have really good sort of long term data. The light treatment, certainly if you are fair skinned, you know, it does give you an increased risk of skin cancer long term. We try and minimise that by using this particular wavelength that's, you know, that's less- considered to be less carcinogenic than say UVA or the type of light you might get in a sun bed. But still, you know, clearly having light therapy does increase your risk to some small degree. And that's why again, we'll count up how many courses someone has and there's quite sort of clear guidelines about how much light you should have over a lifetime.
A couple of people reported other side effects from UVB phototherapy. Zara stopped phototherapy when she developed a rash on her foot that wouldn’t heal. Hannah thinks her hyperpigmentation started whilst having phototherapy. Although no one talked about experiencing these, PUVA treatment can have other side effects and risks – like increased chances of developing cataracts (an eye condition which affects sight).
Outcomes of phototherapy
Nearly everyone we talked to who had phototherapy said it helped clear up their psoriasis, but the result often lasted only for a limited time. Lisa found her psoriasis came back as soon as she stopped phototherapy. An exception is Carys, who passed the “six months window” since finishing phototherapy without her psoriasis returning.
Many said they thought their psoriasis returned slower and less severe after phototherapy. Although Zara had to stop phototherapy, she thinks the treatment helped slow the psoriasis. Steven regrets not moisturising more after finishing phototherapy as he thinks it might have helped. Abbie thinks stress triggered her psoriasis coming back on her scalp.
Phototherapy helped clear up most of Steven’s psoriasis for a few months.Phototherapy helped clear up most of Steven’s psoriasis for a few months.
Phototherapy helped clear up most of Steven’s psoriasis for a few months.Phototherapy helped clear up most of Steven’s psoriasis for a few months.
Age at interview: 22
Sex: Male
Age at diagnosis: 14
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I had six or seven maybe more months where I had, it might even be as long as a year, but you, I kind of forgot. And, I don’t want to say I went back to normal life, because I feel like it was normal anyway and I just get on with whatever. But I kind of almost forgot that there was, I mean I still had my scalp so it was kind of like keeping me like wasn’t completely like gone. So there was that. But it was kind of weird, like my leg would, the funny thing with, like my leg would like itch. I tried for as long as possible not to scratch it, I was like, ‘come on, Steven, be good’. And then I’d think, oh hang on a minute, there’s nothing there to like, there’s no problem, you can scratch that leg. Don’t worry about it. So then it was like [gestures frantic scratching].
[Laughs]
And it was quite nice and you kind of forget about it, completely. And, you kind of get to that unconscious like it’s in the back of your mind somewhere but it’s not really there. And then, I think it was my arm started again, just a little patch. I was a bit like [sigh] here we go again. But then I thought like, you know what’s coming. You know what you’re dealing with. Would try and keep it under control. And I think actually trying has kept it as small as it is now.
Some people were pleased with the result from phototherapy, even though their psoriasis came back a few months later. Abbie liked seeing the progress during phototherapy and her boyfriend made encouraging comments. Lucy had three courses of phototherapy (including one of PUVA) and thinks the treatment is “fantastic and really works”. Adam’s phototherapy worked “really well” and felt like “normal skin again for the first time in my life”.
Others found the emotional impact of the return of psoriasis outweighed the physical benefits from phototherapy. Hannah had two courses of phototherapy before trying systemic treatments. She says phototherapy worked well both times, but it was upsetting when her psoriasis came back after spending so much time going for treatment.
Louie wanted some more phototherapy sessions for some plaques on his stomach. It was very upsetting for him when his psoriasis returned.
Louie wanted some more phototherapy sessions for some plaques on his stomach. It was very upsetting for him when his psoriasis returned.
Age at interview: 16
Sex: Male
Age at diagnosis: 13
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But I did get treated not too long ago with light treatment and I had about 24 sessions of light treatment and that actually worked. But the sad thing is once I’d finished my light treatment it was all gone apart from like one or two on my stomach and I said to the doctors, “Look, there’s still two there. I think I should keep going just so I can happily get rid of them,” because I have a theory that if I scratch –that it sort of that moves along my body but I don’t think that’s scientifically like supported or anything but that’s just my theory. So I said, “Can I like have a few more sessions to get rid of these ones on my stomach?” and obviously they said, “No,” cos they thought it was gone. And about a week later everything just started coming back. And obviously that was a very hard time for me because I thought I’d got past it but then it felt like I’d just been dragged back into like a deep hole of psoriasis – if you would, if you would say that. And that I got really quite depressed and that was at the wrong time because that was just before my mock exams going into in Year 10 and obviously than did sort of hinder my mental state a little bit as in I was depressed, I didn’t wanna go out, I didn’t want to revise.
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