Taking isotretinoin (e.g. Roaccutane)

Before starting isotretinoin (e.g. Roaccutane or Accutane), everyone had blood tests to check liver functioning and many of the young women had pregnancy tests because of fetal anomaly risks. People were often given a one month supply as a ‘trial’ to see how they got on with the treatment. Chris had another blood test after this first month. Emma sometimes fainted at the blood tests but says the nurses were nice about it.

Devan needed to have several blood tests when he started on isotretinoin as the results were unclear. It was also diagnosed that he had asthma.

Age at interview 18

Gender Male

Age at diagnosis 13

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And you mentioned about blood tests when, when you first went, and then when you’ve been subsequently. Could you tell me a bit more about those?

Yeah, they were more sort of last, when I first sort of started it every, [sigh], at one point every week I was in the doctor’s getting my bloods done cos they weren’t right. And then, once they’d sort of settled out, they wanted to just do random check-ups. But now, at this sort of, this sort of two month period that I’ve had with the isotretinoin, they haven’t actually taken any bloods. So they’ve, I think they must be happy with the way it’s showing.

I do have asthma and I’m on the brown inhaler, but that, I don’t, I wouldn’t have said that it interacts but apparently the brown inhaler, with it being a steroid, might have some sort of effects. So, I think that was one of the reasons why they wanted to sort of check me over because they only found that, they found that I had asthma while I was starting the treatment for isotretinoin.

Oh right.

So they sort of found it at the same time.

And was that when they were doing sort of examinations for

It was actually the GP that sort of noticed, and they wanted, the, I, they, I went to see the GP about difficulty sort of breathing, it was sort of like wheeziness that I had and then I booked myself an appointment with the asthma nurse and she sort of did the different tests that she has and then they found out that it was asthma that I’ve got.

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Some people were given a few months’ supply of isotretinoin after the ‘trial’ month. Others had to go back every month for the next tablets.

Often young women did pregnancy tests at each monthly appointment because of isotretinoin risks to the development of embryos/fetuses (unborn babies). Many were given leaflets about these risks and contraceptive options. Naomi had to travel home from university to see her dermatologist. She said it was a ‘palava’ to go every month for pregnancy tests and collect her medicines. Although most found it okay, having to do pregnancy tests could be upsetting, embarrassing and ‘weird’ for those women who were very young and not sexually active. Some young women were also required to be on a ‘reliable’ form of contraception, such as the pill or an implant. Hester took the pill but stopped after a while, as she wasn’t sexually active and had bad side effects from it. Rachael signed documents at the start of her treatment promising she wouldn’t become pregnant which meant she didn’t have to do any more tests.

Rachael talks about having a pregnancy test before she was given isotretinoin.

Age at interview 18

Gender Female

Age at diagnosis 16

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Yeah so they, so I was required to take a pregnancy test prior to starting the drug. And I didn’t like doing that because it was just, well I knew it wasn’t necessary at the time. So, that, I felt that kind of made it even more embarrassing that it had to be. Like, I don’t personally like hospitals or anything, and having to be at one and like do that, I felt was like quite annoying and kind of made it harder than it needed, perhaps needed to be. But apart from that you can sign a pregnancy disclaimer at the beginning so you only have to do one at the beginning and then you don’t have to do anymore. And I felt like that was quite good because then you could just leave it at that but, there were sometimes some like complications like, if you got a repeat prescription, sometimes they didn’t send it to me cos they were like, “You haven’t taken another pregnancy test,” and, yeah it just got a bit complicated but, yeah.

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Those who saw their dermatologist several times during the course of isotretinoin often found it helpful. Abbie felt good when her dermatologist said her skin was improving. Rachael’s confidence in her dermatologist grew over time. Appointments were often opportunities to check about side effects and talk about next steps. For some people, this meant continuing on isotretinoin for a bit longer than initially expected. Seeing the dermatologist also provided the chance to ask questions. Rachael and Hester both talked to theirs about the risks of drinking alcohol whilst taking isotretinoin and how limiting this affected their social lives. Emma’s confidence grew as her acne cleared though she had worries about scarring, something which her dermatologist offered to help with.

There were some difficulties with seeing dermatologists during treatment though. Naomi found each appointment very emotional and distressing. Some found it difficult to get appointments scheduled because their dermatologists were so busy. Chris liked that he was given an ’emergency’ phone number to call if he was worried about side effects.

The dosage of isotretinoin tablets taken by each person varied. Chris thinks it depends on the severity of the acne but also the person’s body weight. Often people started on a lower dose (e.g. one a day) and built up to more over a few weeks. Abbie thinks this helped her body get used to the side effects, which eventually went away. Chris started on one a day which gradually increased to three a day. Others stayed on the same dosage, as for Harriet who had one tablet a day throughout her treatment.

Taking the tablets everyday became a routine for most people. Sometimes family members helped remind the person and Emma set alarms to help her remember. Often tablets were taken around meal times, especially at breakfast, as encouraged by doctors. Devan takes his isotretinoin tablets with milk as he read in the information sheet that this would help protect his stomach lining. Rachael and Naomi both pointed out it’s important to pack your isotretinoin tablets when going away.

Most people stopped using other acne treatments whilst on isotretinoin and some changed their skin care routines. Chris and Will were advised by their doctors to stop using face washes as it can be too drying. Ollie kept using an exfoliating face wash. Emma’s doctor recommended she continue with topical treatments whilst taking isotretinoin tablets. Both prescribed and shop-bought moisturisers were used by some people to counteract the dryness from isotretinoin, as were lip balms. Using suncream was also important as the treatment makes the skin more sensitive to the sun and prone to burning.

Progress and outcomes of taking isotretinoin

The length of time each person was on isotretinoin differed. This depends on how well the drug clears up the acne and what kinds of side effects the person had. Often the duration on isotretinoin was about six months, but could be shorter (Hester was on it for four months) or longer (as for Devan). Shu En moved from taking isotretinoin tablets to a cream version, totalling two years overall, whilst living in Singapore.

Devan’s been on isotretinoin for longer than usual because his acne didn’t respond as expected.

Age at interview 18

Gender Male

Age at diagnosis 13

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The nice doctor that I had sort of most of the appointments I sort of, we, she sort of sat down and calculated how, how long I’d been on the isotretinoin and I think it worked out 16 to 18 months when they normally only prescribe it like in like 12 month blocks, two months’ at a time.

How did, how did you sort of feel about that contrast between the length of time that you’ve, you’ve had the treatment

I just sort of expected it really because, I mean, I’m always, I’m never it’s like I’m a medical nightmare more or less, so [laughs]

OK [laughs]

anything that’s going to go wrong, it usually does [laughs] in that sort of side of things.

Yeah. Does it worry you at all in terms of other side effects, or is it .

Well, I’m on the highest dose possible so I’m getting the highest amount of side effects possible as well, so it’s sort, they sort of balance each other out.

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Will knew he could stop isotretinoin because of side effects, but kept taking it partly out of habit.

Age at interview 21

Gender Male

Age at diagnosis 14

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I think what the dermatologist kind of emphasised was, you know, if things weren’t going particularly well, you know, you could kind of stop it, I think that’s mainly what I remember in terms of support. But as to, you know, you know, a support program or a support network I don’t really remember much about that.

Yeah.

Did you ever consider stopping Roaccutane (isotretinoin) with the side effects that you had?

[Laughs] No. I, well, yes. Yes, I did. But I think ultimately I’m pleased that I stuck with it, I think definitely. But there was never a time where I was like OK, you know, I should probably stop this kind of thing. It’s weird because as I say, like taking it becomes so kind of habitual and so normalised you’re almost not aware of it itself. It kind of becomes a part of you, it becomes kind of, yeah it’s not something that you’re adding to your body it kind of just becomes a part of kind of who you are for that sort of duration of time. So I don’t ever remember kind of really being conscious of Roaccutane coming like I’m, you know, ingesting, I’m taking it in. It was kind of that’s it was like a routine. It’s like a habit.

And it wasn’t something that I considered like yeah, I can stop it. It almost became so normalised that I was like this is just, this is just how it is kind of thing.

So, you know, waking up and taking like a paracetamol like if you’re like, you know, you know, this is rubbish example so I’m going to stop that. But yeah, it just became like a really habitual, really normalised so I didn’t think, yeah, I can, I didn’t think I could stop it almost.

Hm. OK.

I think that was, that’s the main point. I didn’t think that I could stop it even though I definitely could have stopped it.

So it was almost as if I needed someone to kind of remind me that it wasn’t necessary and I didn’t need to carry on doing it.

Yeah.

Like a course of antibiotics where you have to kind of see it through otherwise, you know, blah de blah. I kind of maybe could have benefited from someone telling me, You can stop this, if you want to.

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The decision to stop taking isotretinoin was usually made by the dermatologist. They checked to see how well the person’s acne had responded to the medicine. Some people had follow-up appointments after stopping isotretinoin, so the doctor could check if the acne hadn’t returned. Emma was reassured that she could get a quick re-referral via her GP if her spots started to come back.

Sometimes more than one course of isotretinoin was needed. Usually there was a break of at least a few months between finishing the first course and the decision to try another. Emma’s acne came back after her first course and she went on to have a second. Naomi had two courses of isotretinoin to clear her acne, and a third course when it returned after trying the implant (hormonal contraception). A few people had been offered an extra month of isotretinoin even if their acne had mostly cleared up. Chris thinks this can give ‘peace of mind’. It was reassuring for some to know that they could go back on isotretinoin if their acne came back in the future. Chris felt confident that if his acne returned, he could go back on isotretinoin. Re-starting on isotretinoin could be upsetting though and feel like a ‘huge step back’, which is what Naomi felt.

Ollie had a second course of isotretinoin when his acne started to come back.

Age at interview 16

Gender Male

Age at diagnosis 13

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I think it’s most people, cos you have a first course over eight weeks or something, and with mostit’s something like sixty percent of people, that’s all they need, but with the other forty percent it’s that, it’s just you need a second course cos it’s I think it’s just you have acne slightly worse, and you need to obviously take a second course just to make sure that everything’s cleared up, cos it works with your sort of layers of skin and by you sort of lo-you sort of lose layers, or like lose layers of spots and that’s basically how it works, and if your spots are very resilient and keep coming back then you need a second course just to make sure that everything is completely cleared up. And I suppose that’s why I started getting it the after the first course, it’s cos it didn’t clear everything up. J- so, on the under my skin there were still spots which then led to getting spots later, and then a second course and then having it all cleared up in the future.

So, was the second course something that you anticipated or that your dermatologist had told you to expect?

Eh- the I think generally I wasn’t reallyI’d, I thought that my courses were completely finished and I thought I was done just because my skin was completely fine, or appeared completely fine, so that’s why I didn’t really hear about anything. And then it started to come back, and I think the reason why I didn’t get it straight away and why it took me a while is cos my skin was completely clean, so it looked like I wouldn’t need a second course. So, it sort of like finished everything and that was all done and I didn’t, hadn’t seen my GP for a while, and then they started to come back, and then I had to go get it. So, I suppose if I actually still had spots after my first course it’d probably be better cos I would beI would’ve started my second course earlier cos we would’ve known that I needed, I needed one.

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Hester’s dermatologist talked to her about the chances of isotretinoin not working or the acne returning.

Age at interview 21

Gender Female

Age at diagnosis 15

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I think he was probably fairly keen to stress that that it might not work. Or that there might, you know, we might have to try different dosages, and. And I think at the end they wanted to, he was good at sort of stressing that it can come back, that just because you’ve had quite successful treatment. But I think quite a few of those things I had to sort of ask him about. And like, What will happen if it does come back? And I did say to him like, You know, I’m actually, I’m quite anxious-. I know people, speaking to a friend of mine who actually I don’t know how she managed to get more than she was supposed to have but she actually kept hold of a packet of Roaccutane (isotretinoin), just in case. Cos she was so scared that it would, her acne would come back and she just, she was like, I would just start taking them and gone back to my consultant. Which is not [laugh] good practice, but… Yeah I remember asking about what I’d do if, if anything happened. And I think there’s like a lot of anxiety that the acne would come back. And I don’t think that was really taken into account. I think I had, I had to ask my consultant about that. And be like kind of stressed that I wanted to know what would happen if I started to get symptoms again.

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Several people found that their acne became worse when they first started on isotretinoin, but then improved as the treatment continued for a few weeks. Some found that their skin continued to improve even after the isotretinoin course stopped.

Chris started to see a difference in his skin after five or six weeks of the treatment.

Age at interview 20

Gender Male

Age at diagnosis 17

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Well they, they inform you that you won’t see a difference within the first five weeks. It’s not, it might, they tell you it can potentially get a little bit worse before it starts getting better. But mine didn’t, mine didn’t get worse, mine kind of just sort of, I don’t know, plateaued just kind of stayed gradual. And then after sort of five six weeks yeah, I started to notice a diff-, notice a difference and then sort of four to five weeks on from that, that’s when you sort of really start to see it kick in and it’s kind of onwards and upwards from there really.

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Will’s skin continued to improve even after stopping isotretinoin.

Age at interview 21

Gender Male

Age at diagnosis 14

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And how soon after starting Roaccutane (isotretinoin) did you start noticing there was a difference in your skin?

I think I was quite surprised because it was fairly, it was fairly quick to come into effect, I think like a couple of weeks possibly. I mean, first obviously it was kind of, my skin kind of dried up and all this kind of stuff. And then, yeah, and then, although to be honest, I noticed most of the improvements after I stopped taking it I think probably because I, from what I remember, it kind of stays in your bloodstream for quite a long time and then kind of still has effects on you. So I think it was kind of almost actually after finishing the course that I think I noticed the effects really, yeah.

You know, it was one of those things where I didn’t really track its progress, I just kind of let it do it. And then and, as I say, with what with the kind of side effects and stuff, I don’t know I was kind of too preoccupied kind of dealing with those to kind of be like oh daily update’, you know, oh look that one’s gone kind of thing.

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Most people were very positive about the effectiveness of isotretinoin in clearing acne. Rachael said she was glad she took it and that, for her, it was ‘not as bad as I felt like it was made out to be’. She says it was a good feeling when she noticed her skin was flat and there were less spots. Some people, like Chris and Alexandra, wish they had tried isotretinoin sooner.

Harriet says her skin took a while to ‘recover’ from the dry/thinness after treatment, and that she still has ‘quite sensitive skin as a result of that’. Isotretinoin also helped reduce scarring for some people, like Ollie.

Others used extra treatments, such as Emma who had steroid injections for keloid scars on her chest and Hester who uses BioOil.