Louis

Age at interview: 21

Age at diagnosis: 18

Brief Outline: Louis had a psoriatic rash when he was 18 for about 2 months. The steroid creams and emollients helped soothe his skin, which was very itchy and sore. Everyday activities were affected and it was difficult not having any answers about what was happening.

Background: Louis is 21 years old and a medical student. His ethnic background is White British.

More about me...

Louis had a psoriatic rash when he was aged 18 for about 2 months. The rash started to develop after Louis had the flu. It began on his elbows and spread up his arms, chest, neck and face. Louis’ psoriasis was extremely itchy and sore, but it did not include skin flaking. He described it as a burning itchy with red and blotchy blisters. Louis remembers it being particularly itchy on the top of his back, neck and scalp. He tried various steroid creams and emollients, alongside taking painkillers and antihistamines, and the psoriatic rash cleared over the course of about 6 weeks. Louis hasn’t had any other signs of psoriasis since and he hopes it won’t return in the future.

It was at the point when the rash had moved onto his face that Louis visited his GP. He was given a steroid cream as the GP thought that it might be eczema; the cream soothed his skin but little more, so Louis returned to the GP. He was given a large tub of emollient (moisturiser) and a stronger steroid cream. Louis was referred to a dermatologist and was told that it was probably a psoriatic rash. Louis had heard of psoriasis before, as he is a medical student, and having a diagnosis made it easier to answer other people’s questions about his skin. However, it was also scary for Louis to hear that the doctors didn’t really know why the psoriasis had developed or how long it might last. The dermatologist prescribed the steroid cream Betnovate and a shower gel replacement, since soap aggravated Louis’ skin further. Louis also took shop-bought painkillers and antihistamines to help with the pain and inflammation of his skin. The accumulated cost of these prescriptions was a concern for Louis and he appreciated it when his doctor gave him bulk quantities of the creams, as he was getting through them very quickly. 

Psoriasis and the treatments impacted on everyday aspects of Louis’ life. For example, his sleep was disrupted by the itchiness, requiring him to get up often in night to reapply creams and take painkillers. This led to Louis feeling very rundown and tired. Attending lectures was also a struggle, as he’d have to sit on his hands to stop himself from scratching. He would often take his emollient and steroid creams to reapply in the toilet cubicles or go home to take a cold shower. Louis says that it was a balance between trying to avoid things which might aggravate his skin whilst still functioning with some normality. For instance, he wasn’t able to play rugby anymore and instead started going swimming. At first, he’d worried about the chlorine in the pool water but this didn’t cause a problem and he found it a good hobby for taking his mind off the psoriatic rash. Louis’ creams built up a greasy layer on his clothes and bed sheets which meant he had to do more laundry. He used to wear a select few t-shirts and jumpers which were already coated in emollient, as these were less likely to rub than fresh clothes. Louis adds that someone with a skin condition shouldn’t feel that they have to wear jumpers or scarves to hide psoriasis and that covering up can make you feel more self-conscious. 

The appearance and accompanying pain of the psoriatic rash were difficult to live with. For example, shaving was painful because his face was very sensitive and Louis found that using a blunt razor with lots of shaving foam worked best. The painfulness of his skin was the main concern. It was difficult to wake up already in pain and know that this would only worsen as the day went on. The discomfort and ways this restricted his day-to-day life meant that Louis sometimes became irritable. His housemates were very understanding though, helping him apply creams to his back and keeping the house windows open so his skin stayed cool.

Louis didn’t do much research online about his symptoms, as he quickly realised that trying to self-diagnose would be very difficult. Instead, he trusted his GP and dermatologist. He feels that doctors should also be aware that patients with skin conditions may have concerns such as how to function normally and cope with embarrassment. He says that it’s important to recognise “a person within the skin condition” rather than to treat them as just “a problem that needs fixing”. Louis’ advice to someone having a similar experience as his own is to get used to the fact that the psoriatic rash is not going to go away quickly and try to carry on as normally as possible.

The redness on Louis’ face drew unwanted attention from others. It became easier for him to explain once he had a diagnosis of psoriasis.

Obviously psoriasis isn't particularly a good-looking thing to have on your skin. Very like red, angry, blotchy. And when it started on my arms and on my chest, that wasn't so bad because people don't see it day to day, but when it started coming up my neck and onto my face, then people would say, "Oh Louis, what's that on your face? What-, like what's going on?" And at the start that was a bit [sigh], that was a bit irritating, but I think you get used to that quite quickly. I think, especially once I knew it was psoriasis, I could say, "Oh, got this, don't know how long it'll be there for, hopefully it'll go away, that’s effectively it." But before it was sort of confirmed I had psoriasis, I had to sort of say, "Well I've got a rash, don't really know what it is, don't know what's going to happen to it." So that was-, that was a bit more difficult saying, "I don't know what it is, it's just something that's there." 

Louis stopped playing rugby when he had psoriasis and took up swimming instead.

So I was playing quite a lot of rugby before it happened, and that was a big no [laugh] because obviously that would-, that would make it really, really sore. So I couldn't do any of that. I did quite a lot of swimming, because I sort of checked with the GP and apparently I wasn't gonna to put anything in the water that was going to be bad for anyone else. So I did quite a lot of swimming, which was again really soothing. So it meant that I could go and do something to take me mind off it and get some exercise without it being sore. And I was but initially a bit worried about the chlorine irritating it, but the chlorine seemed to be alright. And again I just made sure I had some emollient on and I was okay. But yeah, it meant that I couldn't play rugby at all. And I had to be careful with sort of pretty much everything else, just to try and sort of stop aggravating it as much as possible.

Louis’ skin became less red and painful when he changed from a shop-bought shower gel to a prescribed soap substitute.

So I found out that showering with hot water sort of made everything quite red and angry and painful. So I started showering with cold water, or sort of lukewarm water, which made, which made a big difference. And the soap I was using wasn't particularly good for my skin, it was quite-, it was-, made me lose a lot of moisture and it was sort of irritating it. So the, when I went back to my GP the second time, I-, he gave me some it was sort of like E45 moisturising shower wash cream stuff that I could use. And instead of sort of like dehydrating my skin and making it itchy and sore, it would just sort of soothe it. Which was quite nice. So that did make a bit of a difference. But I eventually started showering with just like fre-, the coldest water I could get effectively, because it was just so much-, so much nicer to do that. And it would like calm my skin down and soothe it. So, as I say, some of the times when I'd come home and it had been really bad all morning, it was like a really sort of intense pain, I'd just hop in the shower, put it almost cold as possible, and just stand in the shower for sort of half an hour until it got better. Then I'd hop out and cover myself in the creams again. But I think as much-, it was as much trying to deal with the psoriasis itself as sort of making sure that my skin had no reason to be sort of itchy and painful. So while the steroids were probably good in the long term for reducing inflammation and stuff, making sure that your skin was sort of hydrated and had a sort of barrier between it and the clothes that were rubbing on it, meant that you were much, much less likely to get sort of an itchy, painful event. 

Louis preferred going to the doctors than looking online for a diagnosis.

Did you do any research online about psoriasis during that time?

I didn't really do that much. If you go online and start trying to look up skin conditions, you quite quickly get into a- a bit of a sea of something-it is and something-else-itis and this-iasis and that and the other, and all of them sound the same. Red, itchy rash; some of them are here, some of them are there. But they all effectively sound the same. So I quickly realised that I wasn't going to get anywhere from trying to diagnose myself, I would trust the doctors I was seeing to hopefully do the best- like do the right thing. And even though they couldn't say it's definitely this or it's definitely that, and maybe one week they'd say this, and then the next week it looks a bit more like this, I don't think that yeah. I don't- I don't think in my case it was useful to try-, to spend all day trying to work out what it was and Wikipedia this and that and the other symptom, because it wouldn't really shed any light on it, it would just make it a bit more confused. But I think it did make a difference when it was sort of confirmed, as it much as it can be, as a psoriasis, that I could sort of- it had a certain set of symptoms that were- were psoriasis as opposed to being a sort of general dermatitis or an eczema or this, that and the other.

Louis had a one-off period of ‘post-viral psoriasis’ but his doctors didn’t know at the time how long it would last.

Yeah, so it was- [sigh] my dermatologist effectively told me that he didn't know when it would go away. So he said, "I’ve given you all of these things to do, you're doing all the right things; however the nature of psoriasis is that I just don't know when it'll go away. So, all you can do is just keep doing what you're doing, and hope for the best." Which isn't the best sort of prognosis that you can be given. He said, "It may last-, it may last days, it may last weeks, it may last months, it may not go away. Hopefully it'll calm down, but you might have-, you might have this for pretty much indefinitely." Which was quite a scary thing to hear because at the time it was really bad. And if it had calmed down and stayed, that would have been okay, but if it had stayed as bad as it was and not really gone away, that would’ve-, that was quite scary, yeah. I didn't-, I didn't particularly want that to happen. So I think in hindsight I was relatively lucky, because I was given a sort of ‘hopefully it'll go down in the next few months’ prognosis. And it went away probably within a few weeks. Other than odd bits on my arms and my knees, everything was sort of calmed down relatively quickly. I say relatively, it was about a month, yeah. A month, six weeks.

Louis’ psoriasis was so sensitive that any kind of rubbing on his skin irritated it.

Were there any sort of other factors that you had to avoid to sort of minimise aggravating the skin at all?

Try-, sounds quite weird [laughs], try to touch things as little as possible. So I wouldn't be able to sit like this [leaning back], I'd have to sit forward [demonstrates]. I'd wear really loose, loose clothing, to try and avoid touching things. I'd make sure that when I was working I wouldn't sort of-, my elbows couldn't touch the desk, and stuff like that, because that would aggravate it, effectively just touching anything or like rubbing against like a chair arm and things like that, that would be really sore. So I'd try and minimise that. So I would sort of put myself in like a sort of isolation bubble, where I'd try and-, I'd try and touch as little as possible to try and make sure that that didn't happen. But obviously that's not that easy, sort of day to day life, so you sort of try and strike a balance between touching as little as possible and actually being able to function. Because obviously you can't wander round with a big bubble on you and not touching anything. So it was-, it took quite a lot of getting used to, but after a couple of-, sort of two, three weeks, I was much better at making sure that I could get about and sort of do the things that I wanted to do, to an extent, without aggravating it as much as possible.

Louis thinks it’s important that doctors recognise that they are examining a person and not ‘just’ psoriasis.

It was quite sort of, "Take your shirt off." Microscope out. "Let's have a look." Poke it, prod it, see if it changes colour, that sort of thing. When I had my first consultation, there was another medical student in the room. And the doctor says, "Oh come over here, have a look at this, have a poke around." And I was sort of- I was literally just sort of sitting there, just while they- they had a look at it. And [sigh] it's, it's a really- it's a strange experience to just- to just walk in and just sort of be this rash. So I think for anyone who's dealing-, who's coming into contact with someone who's got a skin condition, whether they're a GP or whether they're a friend, whether they're a stranger - try to think that this person isn't just a rash or a boil or a whatever. They are a person who happens to have this quite inconvenient problem with their skin. And they'd much rather you treated them as the person they are than just a skin condition. 

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

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. 

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.

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. 

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.

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.

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.

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.

Louis talks about using steroid creams on his face.

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.

Louis struggled to sleep because of pain and itchiness, which had knock-on effects the next day.

I would take quite a lot of painkillers to get to sleep and antihistamines, and things like that, just as much as I could to try and get on top of it before I went to bed. And just before I'd go to bed I'd cover myself in all my different creams, which meant that my sheets were always really horrible, my clothes were always really horrible for quite a long time, just because there so much like steroid cream and emollient, stuff like that, all over the place. And it would-, I'd usually be able to get to sleep alright, if I sort of dosed up on everything I had, and then I'd regularly wake up in the night and have to get up, put some more cream on, take some more painkillers, and then hop back into bed. So it did make-, it did make me quite run down, just because of having to wake up every two or three hours, and actually get up and re-medicate was quite tiring. And because of the itching, I struggled quite a lot with-, with sort of day to day life. So I was in lectures at the time, and I would sort of cover myself with cream, go to lectures, and then if I had sort of like a morning of lectures, I'd go to about sort of mid-morning, and the pain would be-, the pain would obviously start coming back as the effect of the creams and stuff all wore off, and I'd get really, really itchy. And I'd sit there desperately trying not to itch and stuff like that. But regularly I'd have to just leave, leave lectures like halfway through, and then head home and just hop in a cold shower, just because the pain was so bad. So I'd hop in the shower, and then come out, re-coat myself in cream and stuff, and then try and go back and do some more work. But it did make things quite difficult.