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.

Side effects included:

  • 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.

Age at interview 22

Gender Female

Age at diagnosis 9

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Harriet was told not to wax her legs whilst taking isotretinoin because the skin would be thinner and drier.

Age at interview 21

Gender Female

Age at diagnosis 12

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  • sensitivity to sunlight and getting sunburnt more easily;

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.

Age at interview 18

Gender Male

Age at diagnosis 13

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  • aching muscles and joints;

Some people found they had to stop taking part in sports and other hobbies for a while. Devan also had headaches and toothache, and found his gums would sometimes bleed.

Abbie found isotretinoin made her achy and tired, meaning she had to stop her part-time job as a gymnastics coach for a while.

Age at interview 17

Gender Female

Age at diagnosis 13

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  • irregular menstrual periods;

Harriet had expected side effects with isotretinoin, like disrupted menstrual periods.

Age at interview 21

Gender Female

Age at diagnosis 12

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  • queasiness (feeling sick);
  • feeling tired and weary, having less energy
  • mood swings, feeling low and depression (see also emotions);

Depression and feeling low were things 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.

Age at interview 21

Gender Male

Age at diagnosis 14

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Nina hasn’t tried isotretinoin because of links with depression.

Age at interview 20

Gender Female

Age at diagnosis 12

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Rachael thinks it’s difficult to work out why she felt upset at times whilst taking isotretinoin.

Age at interview 18

Gender Female

Age at diagnosis 16

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Other risks associated with isotretinoin, but which no one talked about experiencing, were:

  • 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.

Age at interview 18

Gender Female

Age at diagnosis 16

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Hester sometimes found it easier to tell people she couldn’t drink any alcohol at all, rather than explain in more detail.

Age at interview 21

Gender Female

Age at diagnosis 15

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  • birth defects – it is known that isotretinoin causes fetal anomalies (birth defects) in people who become/are pregnant whilst taking the treatment.

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 and sexual health).

Shu En talks about the link between isotretinoin and birth defects.

Age at interview 19

Gender Female

Age at diagnosis 9

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Some people’s dermatologists asked them about side effects at each appointment. Abbie’s dermatologist encouraged her to say if ever she felt depressed or had suicidal thoughts whilst taking isotretinoin. After finishing treatment which worked well, most people looked back on the side effects they had as acceptable things to put up with for the ‘reward’ of clearer skin.

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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A few people thought the more ‘severe’ side effects and risks associated with isotretinoin were overstated. Molly thinks the impact on liver function and depression are emphasised on ‘official’ websites whereas most forum users talked about dry skin and muscle aches.

Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.

Age at interview 21

Gender Male

Age at diagnosis 14

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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...