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Psoriasis (young people)

Psoriasis treatments: non-biological systemic medicines

Many types of non-biological systemic medicine can be used for psoriasis. Different systemic medicines may be tried at different times and the risks as well as benefits should be considered. Cyclosporine and methotrexate are two non-biological systemic treatments for psoriasis (see also the overview on systemic treatments). Both medicines work in different ways by slowing down the skin cell production and reducing inflammation. They are usually taken as tablets, but can also be given as injections.

Five people we talked to had taken cyclosporine (Zara, Lucy, Hannah, Lisa, Sofia) and five people had tried methotrexate (Zara, Lucy, Hannah, Lisa, Megan). Everyone had taken their medicines in tablet form and Hannah had also tried methotrexate injections. Some people had tried a medicine several times at different points in their psoriasis treatment: Lisa took cyclosporine for 1 year, then methotrexate for 6 months, went back to cyclosporine for 1 month, stopped medication when living abroad and back to methotrexate when she returned to the UK. Lucy’s taken cyclosporine and methotrexate in the past, but doesn’t like “pumping my body full of medicine”. She prefers phototherapy as a psoriasis treatment. 

Cyclosporine (also spelt ciclosporin)

Cyclosporine was the first systemic medicine for psoriasis Lucy and Lisa took, after trying other treatments like steroid creams. It was the only systemic medicine Sofia had tried. People took their cyclosporine in tablet form daily. Sofia remembers her dose was two cyclosporine tablets a day. Zara said she found it easier to swallow cyclosporine tablets even though they’re bigger in size than methotrexate tablets.

Some people found cyclosporine helped their psoriasis. Lucy took cyclosporine whilst at college which she says helped her psoriasis a lot. She took it for six months but worried the whole time about plaques coming back. Zara says cyclosporine worked well for three months but then her psoriasis went back to the way it was before. She stopped taking cyclosporine when her doctors offered phototherapy. 

Several people had unpleasant side effects when taking cyclosporine. For Hannah and Sofia, the side effects were the reasons why they stopped taking cyclosporine. People talked about:
  • headaches
  • feeling nauseous (sick, queasy)
  • losing their appetite
  • stomach pains, including cramps and digestive problems – Sofia says it felt like the tablets got “stuck in my stomach”
  • hot flushes
  • itchier skin
  • difficulty sleeping
  • tiredness
  • mood swings (see also emotional impacts)
 

Hannah says she had a number of side effects while taking cyclosporine, including disrupted mood which impacted on her relationships with friends and family.

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Age at interview: 24
Sex: Female
Age at diagnosis: 16
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So all of the side-, all of the major side-effects are basically about your immune system being low and you being more likely to get like serious illnesses. But the ones that I experienced were just, I had bad headaches and I felt nauseous and certain like food would make me sick. So like diet coke would make me feel really ill and things like that. Which was strange, like that wasn't written down anywhere that I could read. I just noticed it, that when I wasn't on it I could drink it and I felt fine and when I was on it I, like yeah I felt weird. And it would just make my stomach like in pain, I'd get cramps all the time. So yeah, I-, and also it affected my mood like a lot. And that was something that I wasn't that aware of, but my friends and family would tell me a lot. So I became more irritable and I also became a lot more depressed and angry and, you know, sort of emotional and crying all the time about things. And also aggressive, you know I pushed people away a lot of the time and even when the cyclosporine was helping my skin, I could feel like it was still really affecting my mood. Cos usually when my skin's better I feel like a lot calmer, [laughs] I’m a lot nicer to people when my skin's better. But with cyclosporine, I struggled with my personality. I don't know, it felt strange, it felt like I couldn't really recognise myself. I'd look back on it now and think you know I just, ‘that was a completely different person.’ Most of the time angry, just angry all the time. And I felt like I wanted sort of-, it was weird I wanted to talk about it all the time because it was like, it consumed my life and I wasn't really going out. But at the same time when I did go out I didn't want anyone to know. So when I was at home with my friends, you know, it was kind of all I'd talk about, to the point where like my mom and dad would often say to me, you know, like “There is nothing we can do, like you’re on this medication and we can't talk about it 24/7. You know, you have to just like try and cope, and try and see the bigger picture.” And I think everything would anger me, like every time somebody told me to, “See the bigger picture. You’re on medication. You are gonna be fine. You're not dying of anything.” Everything would just kind of anger me and I'd just sort of lash out. And I feel a lot calmer on this medication, it seems strange to think that medication could affect your personality so much, but it did. And I instantly sort of saw the difference when I came off it and I went on other things, even though my skin was still bad I felt different.
 

Zara’s unsure if cyclosporine made her feel tired or if this is from her epilepsy medicine. Her doctors checked to make sure her psoriasis and epilepsy medicines wouldn’t interact.

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Age at interview: 16
Sex: Female
Age at diagnosis: 2
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I was 14 when I was diagnosed with epilepsy.

Okay.

So I couldn’t really tell if it was the fact I was having regular seizures or the cyclosporine that was making me tired. And then when they gave me medication for the epilepsy I did feel an increase in tiredness I use to come home and have a nap in the afternoon, but I do believe that was the epilepsy medication rather than the cyclosporine.

Okay and do you know why you had that feeling, how could you tell?

Because within the first three months of well the first few weeks of being diagnosed with trying cyclosporine I didn’t feel a 
 
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Sofia remembers her skin improving very quickly, just a few days after starting cyclosporine. She had to stop taking the medicine because of side effects.

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Age at interview: 16
Sex: Female
Age at diagnosis: 6
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Last year I used to take tablets like Cyclosporine and it had a really good effect, but then it used to affect my digestive system. So, I couldn’t really like eat a lot and it just seemed like the tablet used to get like stuck in my stomach. This is why it affected my appetite and often my mood.

How long did you take the Cyclosporine for?

I think it was a few months until I stopped it. 

It’s for people who had kidney transplants so it was quite strong. That’s why I’m a bit scared about using it, but then, it had a really good effect within two or three days. So I would’ve continued using it if it didn’t have the side effects. 

Did your doctors tell you that you might get side effects with it?

Yeah, they did. And they were like it’s all right if you wanna stop using it, so I did.
Louie has a family history of lymphoma (cancer of the lymph glands) and he would be at greater risk of getting it if he took cyclosporine. He plans to start methotrexate instead and is hopeful about this treatment.

Methotrexate

Methotrexate is a systemic medicine usually taken only once a week, either as a tablet or as an injection. Megan’s mum reminded her to take her methotrexate every week. The dose of methotrexate varies but the person may have to swallow several tablets on the day of the week that they take their medicine. Zara didn’t like this: “I couldn’t swallow them I always felt like they were going to dissolve and not taste nice”. Lisa takes folic acid tablets on the other six days of the week. She takes these tablets at the same time each day so she doesn’t forget.

Some people found methotrexate helped their skin. Hannah says it controlled her psoriasis well most of the time she was at university but then “plateaued”. Lisa says she’s also “glad” methotrexate can help with psoriatic arthritis which she thinks she could develop in the future. Zara didn’t find methotrexate made much of a difference to her psoriasis. 

Not everyone had side effects from methotrexate, but some said they did. These included:
  • headaches
  • feeling nauseous (sick and queasy)
  • losing their appetite

Other downsides mentioned were:
  • having to go for regular blood tests
  • being unable to drink alcohol whilst taking the medicine which was a particular concern for those taking methotrexate while at university, like Lucy 
  • having to avoid eating/drinking foods high in potassium (e.g. grapefruit), as this can interact with cyclosporine and methotrexate
  • risks of fetal anomalies (for both men and women) which meant the person taking methotrexate shouldn’t become pregnant or impregnate another. Lisa’s doctors have told her to be very careful and use multiple forms of contraception
 

Megan’s blood tests showed a problem with her taking methotrexate. She started having biological injections instead and now only uses topical treatments.

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Age at interview: 16
Sex: Female
Age at diagnosis: 7
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It worked, but it also made me feel really sick all the time, and like sometimes I was sick after I took it. So, they started monitoring it, and I had to have monthly blood tests, and then cos my liver function dropped I had them every week, like every Thursday. And then my liver function dropped again, so they said that I shouldn’t be taking them, so I stopped taking them, and then got put on my injections. And my injections worked, and I had to do them every week, like on alternated legs, so that I didn’t like put it too much in one leg. And I did that for six months, and then I got took off them as well because of some of the complications with my liver again.

And then a few months-, I think it was last month, I went to the hospital and all I need is creams cos the injections worked, and they turn off whatever switch was on, but they just didn’t agree with my liver, so I couldn’t take them.
 

Lucy says the side effects and restrictions when taking methotrexate outweighed the benefits for her.

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Age at interview: 24
Sex: Female
Age at diagnosis: 11
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With the methotrexate cos I was given loads of information about it cos it’s such a strong drug, when I first started. And, with psoriasis it’s used in very low doses. But in higher doses it can be used for chemotherapy treatments and things like that. Which scared me a bit. But then I spoke to my dermatologist and he said, you know, “It’s in very low doses and because it can affect your liver.” I had to have blood tests every two weeks. So they were very, very good at monitoring the effect on me. But, I was in my final year of university and had final exams and essays and stuff. And, it made me feel sickly. I took it once a week. And I think I took it on a Monday and the Monday, Tuesday, Wednesday, I always felt really, really sickly and headache-y as well, which was strange. But things like going out for a meal. I’d go out for a meal with my boyfriend. I can remember one particular time, we went to this lovely Indian and I couldn’t eat anything. I had this sort of starter and I felt really sick and I love Indian food. And, so just, it affected me like that. And it was, it was a shame, really, cos my skin, I felt the best I felt, like I felt like I looked normal, you know what I mean? And but yet, I was feeling so sick and headache-y and quite tired, I think. And it just, it got to the point, I was on it for a good few months, and it got to the point where I thought, ‘I’d rather have a bit, a bit of psoriasis and keep it under control with topical things maybe, than feel like this all the time’. And like I say, it affected my social life as well. And I know it shouldn’t. It really shouldn’t have, cos you do not need alcohol to be sociable. But I think it’s [coughs] it’s quite a big aspect of uni life and things. And I did still go out and not drink and had a nice time. But I felt that my friends were thinking, ‘oh, she’s been boring, she’s not drinking’ and didn’t really understand how serious the medicine was, where you can’t drink on it, cos it can really affect your liver. So, it did come with, with a lot of problems in my experience. And unless it got very, very, very bad, I probably wouldn’t like to go on it again. 
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