Luke Reeves was only 16 when he decided to start using the drug Roaccutane (isotretinoin), to treat his acne. Described as a handsome and popular teenager by his parents, it was only after he started taking the drug he started showing signs of depression. His skin may have cleared but his mental health condition deteriorated and five years after he was first prescribed the drug, Luke committed suicide age 21 last month. This week an inquest has been launched into his death.

Robert Reeves, Luke's father, told The Times newspaper that Luke had become irrational, lethargic and eventually suicidal: “He needed more support. We want parents to realise how dangerous these drugs can be. We want this to be investigated.”

According to the NHS and the American Academy of Dermatology around 80 to 85 per cent of people will have acne at some stage between the ages of 11 to 30 – it's one of the most common skin complaints in the world. For many people the condition will clear up without a need for treatment and Roaccutane is usually a last resort option for acne sufferers in the UK. The drug has a 95 per cent success rate in clearing up acne in four to six months and for roughly 70 per cent of people, skin stays clear for life afterwards. 

As a sufferer of acne which has lasted beyond puberty, I can understand why so many people choose to use the drug, but there's no denying its side effects can be terrifying. Horror stories live in the corners of YouTube and in obscure internet forums. On the packaging they're are listed as including joint pain, back pain, peeling skin and skin rashes, and women who are sexually active need to have regular pregnancy tests as Roaccutane causes such a high risk of birth defects.

“An MP claims the drug has been linked to 44 suspected suicides and nearly a thousand episodes of psychiatric disorders since 1983”

And then, of course, there's the mention of depression or related disorders. Nearly every single person I speak to about using Roaccutane as a teenager or young adult said they had some kind of mental health problem while using the drug, and although it's hard to isolate the cause, according to prospective Tory MP Ed Vazey, in 2013, 30 MPs backed a Commons motion calling for action – noting that the drug had been linked to 44 suspected suicides and nearly a thousand episodes of psychiatric disorders since 1983.

Lana, 22, was 18 when she first started using Roaccutane to treat severe acne on her back and face. "I was referred to a dermatologist who prescribed me Roaccutane as a last resort," she says. "I wasn’t aware [it could cause depression] as the dermatologist didn’t mention this to me. The first time I had the worst side effects – starting from the most minor being eczema, to the worst being how my mental health was affected. I would be really sad with the lowest self esteem. Like it reached a point where I would walk around with a hood on my face just to hide from everyone at college." 

During her second course of treatment Lana says she was more prepared for the side effects but that she still had "really bad mood swings and randomly crying and being sad". One year post-Roaccutane her skin sadly hasn't improved. "My acne is worse than ever," she says.

Others I speak to also say Roaccutane has left long term psychological damage. Beth*, 26, was put on suicide watch while on Roaccutane treatment in her late teens (although she was having suicidal thoughts prior to treatment). "Roaccutane destroyed me," says Alex, 19. "I have to fight depression, paranoia, anxiety, stress and acne again." Like Lana, he wasn't told about the possibility of Roaccutane causing depression before he was prescribed the drug.

“The way my doctors dealt with the depression and suicide risk was to say that people with severe acne have a raised suicide risk anyway”

Rav Seeruthun, medical director of Roche, the drug’s manufacturer, told The Times: “We recognise that severe acne can lead to changes in mood, self-esteem and in some sufferers lead to depression. This is why the information provided with isotretinoin [Roaccutane] carries a warning that some patients may experience mood changes, including an increase in depression.” Roaccutane users are also normally expected to have regular check-ups with their dermatologists to check dosage and to disclose any previous episodes of depression.

Nevertheless, there's clearly a problem if some dermatologists in the UK aren't clearly explaining to their patients of the fact that Roaccutane can cause mental health issues.

Another issue is separating depression caused by acne itself from depression induced by the drug. It's true that for many people acne causes low self-esteem, anxiety and even clinical depression. For instance Ella, 24, says she was "well aware" of the side effects but that her acne was making her so miserable that she didn't care.

"The way my doctors dealt with the depression and suicide risk was to say that people with severe acne have a raised suicide risk anyway and the increase in quality of life that people got after taking Roaccutane made it worth it," she explains.

“Research has come in to show that there isn't really a link between Roaccutane and suicide risk”

Speaking to Sue Ibrahim, a dermatology nurse consultant who owns Elan Medical Clinic in Essex and London, she tells me that in her 30 years of practicing she hasn't treated anyone who has had depression while on Roaccutane.

"Over the past few years some patients have been reluctant to use Roaccutane because it's had a bad publicity. But research has come in to show that there isn't really a link between Roaccutane and suicide risk," she says. "When you're dealing with people with any skin condition – whether it's acne or severe rosacea – the very fact that they have the condition can mean that they suffer from depression and social anxiety and that sometimes doesn't relate to his bad their skin condition is."

The research she's referring to found that it was not possible to identify a clear biological mechanism by which the active ingredient in Roaccutane would cause psychiatric disorders. And for people like Adam, 27, who had to be hospitalised because of an incredibly severe form of acne fulminans, the drug didn't lead to any psychological problems. In fact, despite not being made aware of the risks to his mental health, Adam says he resents the fact that he wasn't prescribed Roaccutane sooner.

"Having open sores across your upper torso and arms makes it almost impossible to sleep, required full dressing every day and quite severely impacted my quality of life," he says. "Any depression I suffered before or after treatment was a direct result of not being treated with Roaccutane sooner."

So although the risks of using Roaccutane are definitely worth further examination, there is plenty of weight behind the idea that the depression acne may cause is just as worrying as the depression Roaccutane may cause. And, as it turns out, the Instagram generation have created an incredibly supportive community to help people get through their Roaccutane treatment.

Natasha Berry, 22, runs a popular Instagram account @roaccutanediaries, which tracks the ups and downs of using the drug. "Side effects have been tough," she says, "dry flaky skin, the mood swings, achey joints... [but] I love being part of an online community and seeing other people's improvements and growth in confidence and sharing tips on products and how we deal with different things to get us through the process."

Many of the other people I talk to acknowledge that ultimately there needs to be a change in how we talk about skin conditions in the UK. Although the type of acne Roaccutane is often used to treat is physically painful and needs to be stopped for people's quality of life, there are many other people living with acne in the UK who just need support in accepting their skin as it is – which could also stop them from using a drug with potentially life-changing mental health side effects. However, until more research is done, it seems the link between suicide and Roaccutane will remain tentative.

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