What is isotretinoin?
Isotretinoin is a retinoid drug (related to vitamin A) used to treat acne. It works by reducing oil production, inflammation and the amount of bacteria on the skin.
Nearly half of the young people we interviewed had taken isotretinoin for acne. Molly also hoped to start treatment soon. A few people, like Nina and Sarah, had been offered isotretinoin by their doctors but decided not to take it because of side effects.
Isotretinoin was often called by a brand name, such as Roaccutane or Accutane. Most people used the tablet form though there is a topical cream containing isotretinoin which Will had recently heard about and Shu En uses Isotrexin which some GPs prescribe. Isotretinoin tablets can only be prescribed by dermatologists, so it’s not available from GPs (see also the section on medical professional's referrals).
Dr McPherson explains about the drug isotretinoin (e.g. Roaccutane).
Dr McPherson explains about the drug isotretinoin (e.g. Roaccutane).
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So they come from a family called retinoids. And that comes from something called vitamin A. And they have an impact on many of the processes that are implicated in acne. So they actually sort of work at a cellular level, reducing some of the sebum production, reducing some of the bacteria, and reducing the sort of hyperkeratinisation. So they seem to be very, very effective treatments for acne, if used in the right people at the right time. And, you know, 90 percent of people will see an improvement to clearance of their acne, particularly on a tablet form, but the topical treatment can be useful in certain cases as well.
Shu En describes how she understands isotretinoin to work.
Shu En describes how she understands isotretinoin to work.
Age at interview: 19
Sex: Female
Age at diagnosis: 9
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After puberty, I had acne, for which I took Roaccutane (isotretinoin) which is this very powerful drug that like mimic, mimics the structure of vitamin A, yeah. So, that really, that works by like shrinking the sizes of your oil glands. So, it cleared off fairly quickly. But it tends to relapse when you, when you stop taking the medication, yeah. So, now it’s in a controlled state, because of, cos I have creams that contain the same ingredient as Roaccutane, but you put, but it’s a cream instead of an oral supplement, so it, in fact, it isn’t that strong.
Most people who had isotretinoin whilst living in the UK did so on the NHS and didn’t have to pay for the treatment. Abbie and Hester started out seeing a private dermatologist, but transferred to NHS care. Naomi had one course of isotretinoin privately to avoid long waits for referral appointments but her two previous courses had been through NHS.
Naomi saw a dermatologist privately when her acne returned, having previously had a long treatment process through the NHS route.
Naomi saw a dermatologist privately when her acne returned, having previously had a long treatment process through the NHS route.
Age at interview: 22
Sex: Female
Age at diagnosis: 9
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I mean the first time I went I didn’t really know what to expect and like I knew that it was just going to be a kind of stronger version of medication and that was why I was in a hospital rather than the GP, but like I didn’t really understand what was going on. and yeah but then the second time obviously, I’d, it had come back and the GP had made me try some other stuff that I’d had before but it had never worked and of course it didn’t work. and so I was kind of frustrated and just really upset that something that I thought was over had just kind of come back. and the fact that I was like going back to this hospital and like I didn’t want to have to go through that again but I knew I was going to. and then yeah the third time was possibly even the worst because I felt like it was my fault and, and because I was having to go privately so I felt guilty about the fact that I was like spending all this money on something that most people would just say was like a vanity thing and like, you know, “Why, why don’t you just wait and go to the NHS doctor?” And like even though no-one ever said that to me – it felt, it felt so bad because it felt so like selfish. But and I remember I went in and, you know, you have to like sign a form to say that it’s like to say that you’ll pay for the appointment and I just remember they kept saying like , “So you're a private patient?” and I was like, “Yeah, I’ve come here privately,” and then they were like , “So do you have insurance?” and I was like, “No, I don’t have insurance, I’m paying for this privately.” and then they were, they were like, “You know you have to pay for this?” and I was like, “Yes. Just let me get-,” and I was just like crying and like, “Please, just let me-, I just really, really want to see the dermatologist.” and yeah so that just felt really awful and like obviously every time I went to see every time I started the Roaccutane (isotretinoin) like the second and third time, it felt like, it felt good in that I was finally doing something that I knew would work because it had always worked for me but it was also really emotional because it felt like a huge step back and like ‘oh I’m back where I was before’ and you know, back to square one, all this kind of stuff. That’s like just really emotional [laughs].
Deciding to take isotretinoin
Everyone who had taken isotretinoin had tried other acne treatments before or alongside it, such as topical medicines and antibiotics. Isotretinoin was seen as a ‘step up’ from other treatments and some described it as a “final” or “nuclear” option. Abbie thought it was good that she had tried different medical treatments first. Others, though, found the process time-consuming and frustrating. Some felt their doctors were reluctant to refer them to a dermatologist. Chris saw it as a “matter of patience” with trying other treatments. Other times, a doctor raised the idea of trying isotretinoin but the person wasn’t keen.
Some people hadn’t known that isotretinoin existed for acne until their doctors mentioned it after many appointments. Emma knew a bit about it because her older brother had taken it. Others had heard about it earlier but decided it wasn’t for them at that point or at all. Nina has a history of depression and doesn’t want to take isotretinoin in case it causes side effects such as mental health issues. Hester had been offered it when she was younger, but found other acne treatments were working well enough then.
Chris thinks doctors should tell acne patients about isotretinoin so they’re aware of it.
Chris thinks doctors should tell acne patients about isotretinoin so they’re aware of it.
Age at interview: 20
Sex: Male
Age at diagnosis: 17
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I’d advise GPs to sort of bring up Roaccutane (isotretinoin) a lot sooner. Like sort of maybe not offer it to them, but maybe offer them a course of action. So you say, say they’ve tried one or two treatments, say, “All right, what do you feel about Roaccutane Talk to them about it then, and then say, “OK, well, we’ll put you on this prescription now, if this doesn’t work, are you happy to go on to Roaccutane?”. So then, as a sort of patient you’re, you’re sort of more confident, you think, “All right, I’ll do this, if this doesn’t work I’ve got Roaccutane and that’s like 90% effective or whatever”. So you then feel less frustrated if you’ve got to go back and, then they give you another sort of drug. So, yeah, I’d just say like, bring up Roaccutane like don’t sort of, I mean, yeah, it’s got bad side effects and things, but you can talk through them when you’re with the patient. So I’d say, yeah, just bring it up a lot more with people who have it have it quite badly.
Many people were initially put off by things they had heard about isotretinoin, especially by the side effects. Rachael described it as a “controversial” drug. People had often read online about isotretinoin risks. Hester and Devan found some of the websites unhelpful because they were mostly aimed at people living in the US rather than the UK. Devan found the online information about isotretinoin at the time “a bit generic” and “not really targeted for a young person”. Abbie found it useful to read an online blog written by someone about their treatment.
Some people asked their doctors about isotretinoin risks but didn’t always get helpful responses – such as being told that they shouldn’t read things online about acne treatments. Other times doctors gave the person more information so they could make a decision that was right for them. Devan’s GP talked him through the risks and he began the treatment when he “ran out of options” with other/combined treatments. Many appreciated it when doctors clearly explained side effects and the likelihood of having these. Some people were also given leaflets.
Devan didn’t like the sounds of isotretinoin when he first heard about it. His GP helped him make a decision about trying it.
Devan didn’t like the sounds of isotretinoin when he first heard about it. His GP helped him make a decision about trying it.
Age at interview: 18
Sex: Male
Age at diagnosis: 13
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So it had been quite a few years of trying different treatments, so the GP, up until then …
Yeah. Quite a lot of different treatments, yeah.
Yeah. And you said you felt frustrated?
Yeah, that’s was when I, when I sort of left secondary school, well it was sort of part way through secondary school that I sort of really got frustrated about there’s nothing working. But then once I left secondary school I had a bit more confidence to be able to just say, “Right, I need to do something now”.
Hmhm. Hm. Hm. Do you remember when the dermatologist was first mentioned as an option by the GP?
I, yeah, and I just said, “There’s no chance”. And, I mean, to be fair, at the minute it sort of, I didn’t, I sort of wouldn’t have done it differently purely because I’d still wouldn’t have been confident going to see them.
Yeah.
But what, after the GP sort of explained it to me that it’s not all bad and, you know, there’s really nothing to lose doing it I sort of come round to the idea of actually going to see them.
But when I was a lot younger, I wouldn’t have, there was no chance that I wanted to speak to them.
Hm. Hm. Could you say a bit more about why it was that you sort of at first really didn’t want to?
It was purely just because the bad press and everything like that. They, what the, it just sort of seemed like more side effects than positives. But now I’ve sort of been on the treatment, and I’m still on it, I’ve sort of noticed that the side effects, yeah they are there but you can manage them and I’d rather have these side effects than have the acne.
Molly talks about decision-making and isotretinoin. She also has some unanswered questions about the treatment.
Molly talks about decision-making and isotretinoin. She also has some unanswered questions about the treatment.
Age at interview: 20
Sex: Female
Age at diagnosis: 11
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Could you tell me a bit more about why for quite a long time you didn’t want to go on Roaccutane (isotretinoin)?
I mean I think, there’s a few reasons. The first one was that like because it was a last attempt I didn’t want to take it and not have any result from it and then be like ‘okay well I’m stuck with this then’ so it has been a kind of thing where I’m like I’m willing to try everything else and go through that process and, which takes a long time and I spose I’ve probably had a bit of patience in doing that. But also like there’s, there is a lot of stuff I read in, in the newspapers about like links to depression and suicide so the more I looked into it the more I was kind of, not sceptical I wouldn’t say that, but willing to look past that aspect. But for like a long time it, it didn't seem like a good idea because I was like a lot of the medications I do have don’t have those kind of side effects like supposedly. So why would I then switch to one that did? But I’m at this point I’m like ‘I’m just gonna go for it’.
I mean I decided to go on it in this summer because like I don’t suffer from anything like depression or anything, but that is a link that keeps cropping up. So I think if I take it when I’m at home then I have my kind of mum and dad to kind of monitor my moods potentially better than like my flat mates could and like I don’t really expect them to monitor my moods either like that’s not their job. So in that sense, I’ve gone for that. I‘ve heard that like it can give you like joint pain and that you have to have, so you can’t get pregnant on it and you need to have like monthly pregnancy test and blood tests because like it has a big impact on your liver.
But I’m not, I’m not sure of the mechanics of the pill itself but I’ve heard that a lot of people who have taken it have had quite dramatic results. But then that is the most generally, I think the most severe acne has, is given Roaccutane. But I don’t know why it's different from other medication, that’s never actually been spelled out for me like, what it’s doing differently from anything I’ve taken before and like why is Roaccutane like, why is there more caution around Roaccutane? Cos it must be interacting with like your liver differently and your organs but I don’t know I’ve never had it explained to me like in what way.
Family members, especially mums, were often key in decision-making about isotretinoin. Some parents were wary of the risks and felt strongly that the young person shouldn’t take it. This included worry that taking it might disrupt the person’s studies, particularly if they had important exams coming up. Parents were often sources of support for young people taking isotretinoin in other ways too: emotionally (as someone to talk to), practically (reminding them to take the tablets) and financially (for those who had private medical treatment). Chris and Will also talked to their friends about their decisions to take isotretinoin.
Will started on isotretinoin just before his GCSE exams – something his mum was concerned about.
Will started on isotretinoin just before his GCSE exams – something his mum was concerned about.
Age at interview: 21
Sex: Male
Age at diagnosis: 14
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I think the decision making was, you know, this is quite a big part, you know, at the time, you know, everyone thinks GCSE’s are the end of the world and stuff so I think it was quite a big decision for me to think, you know, ‘is this going to really jeopardise like my GCSE’s and stuff?’ So that was the main thing and I don’t know, I just felt that, well, my mum felt in particular that this might really kind of kick things into touch in terms of like my academics or whatever so, yeah that was like the main thing in terms of GCSE’s, but …
I don’t know, I didn’t really kind of consider that, you know, at the time. I was like ‘yeah, I can smash ‘em, whatever’. So, I don’t know, I didn’t really kind of thing, ‘yeah, this is going to really impact on my kind of academic performance’ or anything, I think it was my mum who was more concerned about that kind of aspect.
Sarah has several reasons for why she’s never taken isotretinoin.
Sarah has several reasons for why she’s never taken isotretinoin.
Age at interview: 22
Sex: Female
Age at diagnosis: 16
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Doctors had quite consistently recommended Roaccutane (isotretinoin) but I looked at the side effect list for Roaccutane and I just thought, ‘Honestly I think I’d rather have acne’. So.
That decision about not taking Roaccutane (isotretinoin) was that something you talked to other people about, whether it be family members or the dermatologist or friends?
Yes. Well I spoke to my mum. My mum had been in both consultations where Roaccutane was recommended and the first thing she said when we went out was, “Gosh, you’re not going to go on Roaccutane are you?” And I think after that there wasn’t really a need for a discussion with anyone else.
Was that sort of your opinion as well, of it’s just something to be avoided?
I mean I think my opinion was very influenced by my mum’s reaction to Roaccutane However looking at this now a couple of years on, slightly older and more detached – I would stand by my decision not to go on it and if somebody offered me Roaccutane now I wouldn’t take it. And that is my decision.
I didn’t like the idea of the dry skin because this is a problem that I have had. I didn’t much like the idea of having to go on the pill to be on Roaccutane, having just come off the pill, not having enjoyed it very much. I know the birth defects obviously are only a side effect if you’re pregnant. I think I was just quite freaked out and this doesn’t sound, this obviously is not particularly rational. I was just a bit freaked out to think that if it was powerful enough to cause those birth defects then what might it do to me which, which I know is not particularly rational. But it was just anything that causes those kinds of birth defects I don’t want to be putting it in my body I think was the feeling I had.
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