Acne (young people)
Isotretinoin (e.g. Roaccutane) side effects and risks
There are a number of side effects and risks associated with isotretinoin (e.g. Roaccutane, Accutane) tablets. Often these side effects are banded into ‘mild’, ‘moderate’ and ‘severe’. Most people we talked to had experienced side effects considered ‘mild’ or ‘moderate’, but these could still have a big impact on the person’s life.
Dr McPherson discusses the benefits and risks of isotretinoin treatments.
Dr McPherson discusses the benefits and risks of isotretinoin treatments.
• dry skin and lips – this was mentioned by everyone we talked to.
Will said his skin “dried up to like a prune” especially in the corners of the mouth. Devan’s nostrils felt very dry. Some found their skin became thinner and more fragile. Many used moisturisers and lip balms to help. Hester’s throat and eyes were also drier than usual so she kept hydrated by drinking water and using eye drops. A few people noticed their scalp/hair became less oily too – Shu En saw this as a good thing.
Naomi talks about dry skin as a side effect.
Naomi talks about dry skin as a side effect.
Harriet was told not to wax her legs whilst taking isotretinoin because the skin would be thinner and drier.
Harriet was told not to wax her legs whilst taking isotretinoin because the skin would be thinner and drier.
Oh, yeah. It, it’s most, mostly they all just tend to dry out your skin a lot. I know when I went on the Roaccutane (isotretinoin) he said, “Don’t wax your legs. Because if you wax your legs then because your skin gets so thin it will just like rip your skin off and you’ll bleed.” So I was like, “Oh, okay, I won’t” yeah. And it’s, dry skin is something I still, I didn’t, I never got it before but it’s something I still get now. And I think it’s probably a result of that. Roaccutane as well gives you really just like completely random periods. I had, it was about, it just, for sort of a few months there was just absolutely nothing. But, yeah. But the, the ones, sort of the external creams and things, they didn’t really have any major, major side effects.
So with the dry skin that sort of carried on since you took Roaccutane, how do you sort of deal with that on a day-to-day basis?
I just, you just moisturise I guess. Like I, it’s not too much of an issue with sort of arms and legs cos it’s, you just use like regular moisturiser once a day.
Ollie found he needed more sun cream, though he thought it looked better when he tanned as this made the redness of the acne stand out less. Others, like Abbie, had bad experiences with sunburn which made their acne more painful and visible.
• overheating and increased sweating
A side effect of isotretinoin for Devan is sweating more. His dermatologist made suggestions to stop others noticing.
A side effect of isotretinoin for Devan is sweating more. His dermatologist made suggestions to stop others noticing.
So, obviously that, that’s one of the biggest side effects. Another side effect was, it was like headaches and toothache as well. I had a lot of bleeding gums, my gums were bleeding quite a bit while I were on the steroids for the isotretinoin and, again, that was another side effect, so I’ve sort of had quite a few of the side effects that are listed that you’re expected to get as well.
Well, when, it was sort of recently with the sweating that the doc-, the GP, she sort of says to me, it might be worth wearing tee-shirts with, or hoodies, that have got a hood on that you can sort of hide that sweating with. And so that it just sort of, say if you were sort of sweating on your forehead – you could just sort of use the arm and wipe the sweat off like that, so that nobody would sort of notice it that much. And, but with sort of, when I were in secondary school it was sort of my school uniform was a black hoodie, a black tee-shirt anyway, so you could sort of easily keep that on rather than take it off.
Abbie found isotretinoin made her achy and tired, meaning she had to stop her part-time job as a gymnastics coach for a while.
Abbie found isotretinoin made her achy and tired, meaning she had to stop her part-time job as a gymnastics coach for a while.
How did you deal with the side effects that you had?
Well, I knew that, well, I, I thought it would get better like after a while. Cos I knew that I was taking this and I knew the side effects. So I thought if my skin would get better then I could deal with it at first. And just kind of ploughed through I guess [laugh]. And, yeah, and I kept looking at the, the blogs that I’d found online to see that they’d gone through the whole side effects as well and they’d gone through it. So I thought ‘oh, I can do it too.’Harriet had expected side effects with isotretinoin, like disrupted menstrual periods.
Harriet had expected side effects with isotretinoin, like disrupted menstrual periods.
Yeah.
-- could you tell me a bit about how you felt about that and how you dealt with it? Was it a concern ever for you?
It wasn’t particularly a concern. I just sort of assumed, it kind of puts your whole body in a bit of chaos. So you just get, get this really dry skin and it can sometimes give you other side effects like just feeling quite down. So I remember getting a bit down for, like at various points and you just like, for, actually for no reason. And then you sort of think, you know, “No, this isn’t me. It’s just cos I’m on some like crazy medication” yeah. But you just sort of get used to it and learn to work with it and, yeah.
Were those side effects that your dermatologist or your GP, mostly your dermatologist for Roaccutane (isotretinoin), wasn’t it?
Yeah.
Were those things that the dermatologist had told you about before, to expect?
Yeah, I think he went through, sort of went down the list of all the things that were likely and not very likely and everything in between, yeah. So I, I sort of knew what to expect. And with, yeah, with the irregular periods it’s, you, I wasn’t really surprised because sort of everything else was just a bit weird. So it seemed like the natural progression, yeah.
• feeling tired and weary, having less energy
• mood swings, feeling low and depression (see also emotions)
This was something that most people who took isotretinoin were aware of and a key reason not to try it for others. Others were sceptical about whether it was true and some saw it as “scaremongering”. Emma had heard isotretinoin could cause depression but says it wasn’t “enough of a worry to stop me from going on the medication”. Most didn’t think they had a negative emotional side effect from the treatment, but a few said they had. Taking isotretinoin caused Will to feel down and less confident, affecting him more than his acne had in the first place. He stopped playing badminton and says listening to music became a “support network” when he was low. Some said that exam stress could add to mood swings.
Will talks about the emotional side effects he had whilst taking isotretinoin.
Will talks about the emotional side effects he had whilst taking isotretinoin.
It was just nothing really kind of [laughs] excited me.
Nina hasn’t tried isotretinoin because of links with depression.
Nina hasn’t tried isotretinoin because of links with depression.
Rachael thinks it’s difficult to work out why she felt upset at times whilst taking isotretinoin.
Rachael thinks it’s difficult to work out why she felt upset at times whilst taking isotretinoin.
Yeah. Were there any other sort of aspects, like stresses or triggers for you that you knew kind of made it harder, either physically with your skin, or emotionally to sort of cope with it?
I think it is annoying physically as well because you do still have the spots while you're on it. So, that make, like obviously it affects things. But, I don’t know, I think it's sort of, yeah the triggers I guess would be like academic stresses or like, if you're having like, you know a sort of family argument or, any like friendship problems, I feel like that becomes more of a trigger than it would have been. So, I think that it is triggers but I think you just lose your ability to cope with them as well and yeh.
So, you lose your ability to cope from them because of the emotional…?
Yeah I think you just lose the ability to see that it's not a big deal and you just, I think you just become more dramatic about it I think yeah.
• liver damage – lots of people hinted at this when talking about limits on drinking alcohol.
This is because isotretinoin can affect the liver, an organ which is put under extra stress with processing alcohol. Before taking isotretinoin, everyone had a blood test to check their liver function. Some people had a couple of tests if the results came back unclear. Dermatologists had often told the person to avoid drinking alcohol or given them guidelines on how many units would be okay. This could be a particular concern for those at university where drinking alcohol was often seen as part of the social life “culture” and could shape the decision about taking isotretinoin. Despite their concerns, some drank small amounts of alcohol occasionally and found this to be okay for them.
Rachael gradually eased into drinking some alcohol socially.
Rachael gradually eased into drinking some alcohol socially.
How did you sort of assess how much it would be OK to drink?
Well, at the beginning I drank nothing, I literally had, maybe the most I'd have was like a sip or something. I went out quite a few times and just drank nothing. Even like going clubbing I would not drink anything just because I felt, at first it was, I was just like a bit afraid I guess. Like, cos it's really drummed into you shouldn’t drink on it because it's affecting your liver and then you don’t want to add more like stress on your liver. But after I'd been on it for ages it just sort of… it feels like you’ve got over the side-effects maybe and I just felt like I could drink and I felt like that, because there was less of an ache maybe that I felt more comfortable so.Hester sometimes found it easier to tell people she couldn’t drink any alcohol at all, rather than explain in more detail.
Hester sometimes found it easier to tell people she couldn’t drink any alcohol at all, rather than explain in more detail.
A lot of the young women had to have monthly pregnancy tests to be sure they weren’t pregnant. There’s no evidence that isotretinoin poses this risk in sperm, though Chris thought there might be and his doctor encouraged him to have protected sex with condoms (see also Young People & Sexual Health).
Shu En talks about the link between isotretinoin and birth defects.
Shu En talks about the link between isotretinoin and birth defects.
So how old would you have been when you were on Roaccutane?
Like 16. Yeah.
And did your doctor talk to you about those risks?
Yeah. Will knew he could stop isotretinoin because of side effects, but kept taking it partly out of habit.
Will knew he could stop isotretinoin because of side effects, but kept taking it partly out of habit.
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”.
Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.
Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.
Maybe a little bit too much possibly and I think actually the more, the less severe sort of side effects in a way are more, should be more important to, to be discussed maybe. [Talking in background] So these, these more, these, yeah, like the emotional sort of feelings, the sort of dried up skin, all this kind of stuff I feel is less severe, but actually I feel like it’s got more, it’s got the capacity to affects more people than these, these kind of big scary events. So actually a focus more on these sort of side effects are actually more important than kind of the big scary talk of, you know, people committing suicide and whatnot I think that’s maybe less important in many ways.
Because actually that, you know, those cases are in the minority I think. I’d imagine it’s safe to say like I think, you know, every drug comes with its risk and, you know, it is a, it is, yeah it can be, it can be dangerous, but I think actually being made aware of these more sort of subtle or these more widespread issues I think is more important probably for health care professionals. But I think yeah, I think they’re quite right in giving you, you gotta give the patients’ the facts and stuff, you know, that is important. But sometimes yeah this big scary talk is, I think it put a lot of people off it. I think I was very lucky in the sense that my mum was quite a, she was quite reasonable, she was quite balanced, you know, in her, sort of understanding of like, you know, medicine and whatnot, so she, you know, read up on a lot of journals about, you know, the sort of pros and cons and stuff, but I think if people didn’t have that access to that sort of knowledge I think a lot of people would be like there’s no way I’m touching that. There’s absolutely no way I’m doing that.
So I think it’s important to, yeah. To make people aware that yes, you know, there are these, these big, big sort of risks, but actually, you know, these are in the minority of cases and actually you will, you will go through, you may go through some kind of difficult times, but ultimately they’re not that, for me, maybe I was lucky, that it wasn’t that bad kind of thing, you know, obviously it wasn’t fantastic, but it wasn’t that bad.
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