Megan and Hannah had both tried biological systemic treatments for their psoriasis. These medicines work by reducing the inflammation of psoriasis and are usually used when psoriasis is severe, hasn’t responded to other treatments or if other treatments can’t be used because of side effects. Biological systemic treatments are quite new medicines and are being closely followed by researchers to check there are no unexpected side effects from their use with psoriasis. Adam and Lucy had heard about these treatments, sometimes also shortened to ‘biologics’, but said they aren’t eligible. There are strict guidelines about prescribing biological systemic treatments and they can only be used in specific cases of psoriasis. Lisa asked her doctor about them but was told it was an “extreme last resort” and her psoriasis coverage/severity wasn’t high enough.
There are different medicines currently approved for treating psoriasis, including:
- adalimumab (e.g. Humira)
- etanercept (e.g. Enbrel)
- ustekinumab (e.g. Stelara)
- secukinumab (e.g. Consentyx)
- infliximab (given through a drip in hospital)
Dr McPherson talks about how decisions are usually made about trying a biological treatment and, if so, which one.
Dr McPherson talks about how decisions are usually made about trying a biological treatment and, if so, which one.
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There are lots of different ones. So there's quite strict criteria that come from, you know, both local kind of commissioning groups and from NICE about what type of psoriasis and how severe the psoriasis needs to be before you could even be considered for a biologic. So your first line would be the other medicines, first of all. So you would think about normal treatment first of all. If there was a reason why you couldn't have one of them or you'd had side-effects or poor response and you have severe psoriasis at a certain level - so that's both - psoriasis measured but there’s something called a PASI, which is how widespread and how severe it is, and also by how much it's affecting that person. So a Life Quality Index would also have to be of a certain level. And if those two things are within the criteria, then you would be considered for a biologic. In terms of which one to choose, I mean, that's gonna be a decision made between the doctor and your patient. But there's different classes. So the ones that have been around for like, for the longest, are something called anti-TNF medications or biologics. And they're, you know, probably still considered, you know, first line by most people because they've been used for longest on the most patients so they've probably got the most safety data. There's a new class, which is- so there's one that's also been used for quite a long time, which is called ustekinumab. Which is an anti- slightly different cytokine targets. Very effective for, can be very effective for psoriasis. Probably not so effective for the arthritis psoriasis. But it's licensed in teenagers. But only the anti-TNFs are licensed in younger children. So, you know, you'd have to take into consideration what's licensed. You know, eligibility criteria. And then you'd discuss on a kind of case by case basis. There's no right or wrong answer.
Hannah thinks there’s usually an order to the biological injections prescribed, but her doctors agreed to her choosing a particular one (ustekinumab).
Hannah thinks there’s usually an order to the biological injections prescribed, but her doctors agreed to her choosing a particular one (ustekinumab).
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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And they were happy to prescribe this. It would have been somewhere along the line, I would've, had it had the thing they wanted me to go on not worked. So they were fine with it, but I think it was unusual to kind of decide yourselves this is what you want.
So it was a treatment the dermatologist would've got to at some point?
Yeah it was definitely an option, it wasn't like something that they didn't have in the hospital and nobody else was on it or anything. They just tend to always starts with some-, a certain one and then go onto another. And I think because the injections, the injections are quite expensive I imagine the protocol is that you start with the least expensive and then only get to the most expensive if you need to. But that's obviously the wonderful thing about the NHS, is that you-, we don’t really have to worry about that situation. I just thought ‘this is what I really want, so I'm gonna push for it’ and, you know, like they agreed in the end, so that's fine.
Blood tests are needed before starting biological systemic treatment. Treatments are then given as a regular injection – how often depends on which medicine and brand. Hannah chose to take Stelara (ustekinumab) as she had seen good reviews online about it and would only need an injection once every three months. A nurse visits Hannah’s house to give her the injection, but other people may have to do the injections themselves or get a family member to help. Megan worried about the injection in the lead up to “the needle day”. She was 15 when she had them and thinks it would have been even more distressing to have when she was younger.
Hannah’s psoriasis flared up when she stopped taking cyclosporine. She was then eligible for a biological medicine injection.
Hannah’s psoriasis flared up when she stopped taking cyclosporine. She was then eligible for a biological medicine injection.
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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And then I just sort of discussed biologics and you have to have a certain percentage of your body covered before you’re even, you even qualified for a biologic. So it just happened to be that because when I came off cyclosporine, it came back so violently and was at 70, 80 percent stage that I could actually finally try a biologic. So I probably never would have been able to-, had that not happened because I was at a moderate stage. I wasn't at a severe a psoriasis stage. So when I did, when it did become as severe that's when I talked about going on Stelara. And they would have put me on Humira first, I think they always put you on Humira, then they put you on Enbrel, and then I think Stelara is considered after that. But there isn't really a rule because it seemed like, when I said that was fine, they were fine, they weren't-, they didn't say, “Oh no, you have to do Humira first,” they just said that, “That's what we usually do.” And it just sort of makes you realise that you don't have to do that, if you don't want to. Part of the reason that I chose Stelara, which like seems like a kind of superficial reason, is because the injection doesn't hurt as much as people on the forum had said that other biologics had hurt. So they said Humira hurts quite a lot. Also I think three months was the biggest gap, so I think other ones it was every like month or every couple weeks. So it was the biggest gap and the least painful, so I thought ‘well if that works, that will be great’. So I thought, ‘we'll go on that first and if it doesn't then I can deal with the nastier ones’.
Megan talks about having biological medicine injections.
Megan talks about having biological medicine injections.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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And then my injections, I kind of remembered cos I didn’t like the thought of a needle, so every time it got to that day, I associated it with a needle.
Yeah
So, all day I'd be prepared to come home and have a needle put in my leg and that would be like the needle day [laughs].
And would you do the injections yourself, or would one of your parents do it for you?
My mum did them for me cos I was really worried that I would do it wrong, and I didn’t want to muck it up. So, I got my mum to do it. I could’ve done it myself but I didn’t like the fact of putting it in my leg, and like in case they stuck it in the muscle or the vein or something, I didn’t want to muck it up, and then cause myself an injury. And my mum knew what she was doing so.
At first I didn’t like the thought of it because I don’t really like needles, so I didn’t really like the thought of injections going into my legs. But because I'd had loads and loads of blood tests before, I don’t think it would have affected me as much. If I hadn’t have had the blood tests I think I'd have been even worse than I was.
But I kind of learned that I had to do it, because if I didn’t do it, it was going to get worse. And then, after a while, I just got the hang of doing it, and it didn’t really affect me anymore.
Both Megan and Hannah started biological systemic medicine when other treatments (like steroids and non-biological systemic medicine) hadn’t worked or they had to stop taking them because of side effects. Hannah took a big role in deciding which kind of biological medicine to try. She researched about it on psoriasis forums, something which her dermatologists were interested to hear about.
For Hannah and Megan, biological injections worked well for their psoriasis. Hannah finds the treatment less time-consuming than applying topical medicines or going to frequent phototherapy sessions. She only has to have a blood test once every three months followed by the injection a fortnight later. Hannah says it’s “a weight off my mind” because “I hardly think about psoriasis at all and it’s really nice to not have to”.
Megan had to fit her biological medicine injections around her family life.
Megan had to fit her biological medicine injections around her family life.
Age at interview: 16
Sex: Female
Age at diagnosis: 7
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We did my treatments on a Wednesday, and it was very busy, because like of clubs and everything that my sisters did. But it kind of, it made it like more hectic, but it kind of just, kind of fitted in. Like we'd have like a routine – like while my mum was helping me do my injections, my dad would cook the dinner, so the girls were ready. And one of my sisters would always come in and like cheer me up. Like, while my mum's putting the needle in, cos I don’t like it, she'd like make me laugh and everything. And then that would be our routine, and then after that we'd go back to just getting ready.
Hannah learnt a lot about psoriasis treatments on a support forum. This is where she first heard about biological medicine injections.
Hannah learnt a lot about psoriasis treatments on a support forum. This is where she first heard about biological medicine injections.
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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But I learnt about medications that I didn't really know about. And also things that people were discussing like sort of in 2008 and '09 that like now are available in the UK, so it’s like I've seen like the progress of them. And there’s been people on the forums who were in the clinical trials who now, you know, are like, now it’s available to everyone, kind of like got to see the journey of lots of different medications. In fact the one I’m on now I remember people doing, like the first kind of people on it were discussing it on there and how it had worked for them. Cos the medication I'm on now is quite a new one, it hasn't been around-, I think it has definitely has been around more than a decade. So yeah, I learnt a lot and that's why I decided kind of what medication I wanted to go on. I’d tried loads, I’d tried about three of four before I'd got to this stage, none of them had worked and the one's that had worked I'd have bad side-effects. So I kind of chose myself that this is the one I want to go on and I went to my dermatologist and said like, “This is the biologic that I am interested in going on.” If they, “It seems to have really positive feedback.” I talk a lot about the forum with my dermatologist who was quite interested to know because he'd never read about them and he said like, “I've had a few patients who said they they've looked at stuff online,” but doctors always tend to view looking at things online like it's a negative thing. Even though I felt like it really, really helped me. And I just think it's important to be informed. Like it isn't, it's not that the dermatologist is ever wrong, but it's just that there is more than one option, especially with skin conditions where there is so many different medications. And if you've, sometimes it’s good to just go with your gut feeling – if it doesn't work or you have side-effects, then you move onto another thing.
Megan had some side effects from biological medicine injections, such as headaches, feeling sick and tiredness. Side effects like these and others, such as damage to the liver, meant that some people stopped biological medicines and opted for different treatments. Hannah didn’t talk about having side effects like these from having ustekinumab injections, but she mentioned others risks and concerns like:
- possible damage to the immune system (although she says she’s not felt ill)
- being unable to have live vaccines
- needing to stop taking the medicine well in advance of becoming pregnant
Hannah can’t have live vaccines whilst on biological injections, impacting on where she can travel in the world.
Hannah can’t have live vaccines whilst on biological injections, impacting on where she can travel in the world.
Age at interview: 24
Sex: Female
Age at diagnosis: 16
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Travel is something I've only sort of started thinking about now because it's only on biologics where you can't have live vaccines. And I only started Stelara in December, I hadn't had any plans to go traveling until now and I want to go away to South America. But some areas you need the yellow fever vaccination which is live so there was some restrictions there. And I think that that is really difficult when you’re young. I mean I am getting to the stage now when I am going to go into full time work, so it's not as much of a factor. But definitely for people thinking about taking gap years, or like going away after school and uni and things that, you know, it is like difficult to have to factor that in. And also even without the vacc-, if you put the vaccinations aside, just the fact that you have a lower immune system and you’re going to countries where you know, like food isn’t as clean and water is-, and like you know the conditions make you feel like you’re more likely ill to get ill, so you kind of tend to worry about things as if you’re like an elderly person because you know that your immune system you know might not be able to handle it and you’re more susceptible to getting ill than the rest of your friends would be.
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