Acne

Acne treatments: about isotretinoin (e.g. Roaccutane) and decision-making

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).
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.
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.
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.
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.

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