You’re familiar with the controversial treatment, but what is taking it actually like? Four women share their experiences
You’ve likely heard of Roaccutane, the ‘wonder drug’ that promises to ‘cure’ acne for the 30,000 thousand individuals a year that take it in the UK.
It’s in the press again this week. Two mothers are sharing their heartbreak after their teenage daughters lost their battle with depression. Both were taking the drug at the time, and both mothers, in part, blame Roaccutane. Telling Good Health their stories, they said: “We can’t get our daughters back, but we can warn others about this drug.”
Known for the debilitating physical and mental side effects the treatment can cause, it was linked to the deaths of ten teenagers last year alone according to the Medicines and Healthcare Products Agency (MHRA). The medicine regulator is currently carrying out an ongoing inquiry into the link between the drug and psychiatric disorders and suicidal impulses.
Also sold under the name Accutane, for those suffering from acne, the treatment is often seen as a shortcut way of clearing up their severe breakouts–despite the side effects.
What is Roaccutane?
According to dermatologist Emma Coleman (emmacolemanskin.com), “Roaccutane is otherwise known as oral Isotretinoin and is classed as a Retinols drug. It was first approved as a treatment for severe acne by the US Food and Drug Administration (FDA) in 1982.”
What does Roaccutane promise to do?
It’s an acne treatment drug, but due to its success rate, often known as the acne-curing drug—despite the fact, as with any treatment, success varies from person to person.
Roaccutane isn’t the easiest to be prescribed: Emma shares that “there are very strong guidelines and limitations surrounding the prescription process”. That is, if someone approaches their doctor about their acne for the first time, is below the age of 12 years old or doesn’t have severe enough acne, they won’t get a referral.
If you do have teenage or adult acne, that is, you’re over the age of 12, you are eligible.
What are the side effects of taking Roaccutane?
Women who have started their period are required to take a pregnancy test every month they’re on Roaccutane, as one of the most serious potential side effects of the drug is teratogenicity, or stunted physical growth and development for unborn babies, shares Emma.
“There’s evidence that 50% of pregnancies spontaneously abort during Roaccutane therapy, and of the remainder, about half of the infants are born with cardiovascular or skeletal deformities”, she adds.
According to the NHS website, other side effects include:
- skin becoming more sensitive to sunlight
- dry eyes
- dry throat
- dry nose and nosebleeds
- headaches and general aches and pains
- anxiety, aggression and violence, changes in mood, or suicidal thoughts
- severe pain in your stomach with or without diarrhoea, feeling or being sick (nausea or vomiting)
- bloody diarrhoea
- a serious skin rash that peels or has blisters – the skin rash may come with eye infections, ulcers, a fever, and headaches
- difficulty moving your arms or legs, and painful, swollen or bruised areas of the body, or dark pee
- yellow skin or the whites of your eyes turn yellow, difficulty peeing, or feeling very tired
- a bad headache that doesn’t go away and makes you feel sick or be sick
- sudden changes in eyesight, including not seeing as well at night.
But are these negative mental side effects underplayed? Marie Claire spoke to four women to find out—and one woman who refused Roaccutane outright because of the risks.
“Roaccutane wasn’t right for me: I’ll live with the side effects for the rest of my life”
“I reluctantly went on Roaccutane in 2016 after an assortment of treatments over the last 6 years. After six years of trying various methods—the pill and creams, to name a few—dermatologists told me that I had to go on Roaccutane because nothing else would work. At first I refused, as I was aware of the side effects, but I wanted help.”
“I knew there was a chance I could get a combination of physical, emotional and mental side effects. I didn’t think clear skin was worth that, but the skin professionals made me feel like it was my last resort. My skin was awful and my self-esteem was worse, so thought I had nothing to lose.”
“Taking Roaccutane for six months, luckily I didn’t experience any serious mental side effects but there were plenty of debilitating physical ones. They started during my second month of treatment. My skin became terribly dry – it physically hurt to make expressions and eat at times. It was cracked and flaky and you could see it peeling off my face throughout the day.”
“I also experienced nose bleeds, a few every week for a couple of months. I had to leave lectures on a regular basis which was embarrassing and made me even more self-conscious. My eyes were also unbearably dry and I had to use eye drops throughout the day.”
“While on Roaccutane you become more susceptible to sunburn and sun damage. I went on holiday during the last month of treatment and even though I was very careful, I developed a large amount of moles throughout the following months. I now have to have annual mole checks and am considered a high risk for skin cancer. I can’t help but blame the Roaccutane for this.”
“Aside from being embarrassed and self-conscious of my nose bleeds and dry skin, I didn’t experience mental health issues while taking it. Seeing my skin clearing was a relief and made me happier and optimistic at the time.”
“In hindsight, Roaccutane wasn’t right for me as my acne didn’t stop when I finished my course of treatment. I’ve been struggling with acne ever since and I will live with the side effects for the rest of my life (eyes and moles).”
“Now I’m older with more knowledge, I will not give in so easily if they recommend Roaccutane again. I believe there are plenty of tests that can be done to try and identify the problem before trying to fix it with what they believe to be a “one pill fixes all” treatment.”
– Kerri, 28, Architectural Technologist
“I still get spots, but they’re more normal now. I’d recommend Roaccutane to a friend”
“I started Roaccutane aged 17 after years of trying creams, antibiotics, ointments, and pretty much every other acne treatment on the market. My older sister had been on it a few years before so I always knew it would be an option for me if all else failed.”
“My dermatologist made me very aware of all of the side effects. They are extensive, so it’s important that people know what they’re signing up for ahead of time. Given that I had seen my sister go through the process, I felt very aware of what was to come. For me, I thought it’d would be worth it if it would clear up my acne.”
“I was on Roaccutane for four months. I experienced extremely dry skin for pretty much the entire process. My face and lips were the worst, but my whole body was also much drier than usual. This was by far my worst side effect as it was very uncomfortable on a daily basis. I was able to manage it using moisturiser, however. In addition to this, I did experience body aches throughout which I found prevented me from exercising as normal. Finally, I had nose bleeds very regularly which they warn is a potential side effect.”
“A major warning is increased risk of serious sunburn. This should not be taken lightly. I spent a day doing community service gardening in the sun whilst on Roaccutane. I left having burnt my face. This sunburn developed into a full blistered area on my chin which ultimately led to scabbing which lasted for about 3 weeks. I found this very difficult.”
“Although I experienced negative physical side effects, I didn’t experience any form of depression while on the medication. However, I did find it very mentally taxing to have such dry and uncomfortable skin. For me, my acne got worse before it got better which I found did affect my mood. It is a tough process to go through in the sense that you can’t really cover your acne during it. Before Roaccutane, I was very self-conscious of my skin but could cover it with foundation. The dryness of my skin meant that wearing makeup was much harder than before. I found this mentally tough as for a while my skin was looking worse than ever and I couldn’t cover it. Especially when I sunburnt my skin, I felt down.”
“I do still get spots. But now it’s more normal as opposed to before when I had acne breakouts all over my face. I would recommend Roaccutane to a friend. However, I’d make it clear that it’s very taxing and warn not to go into it lightly. You have to preserve and keep the end result in mind.”
– Vicki, 21, student
“I struggled with depression pre-Roaccutane; my side effects were worth the end result”
“I had clear skin up until I was 18, then I started to get typical teenage acne – if there is such a thing! I was prescribed various treatments over the years, such as tetracycline, erythromycin, and doxycycline, to little or no effect.”
“I was first on Roaccutane for 7 months from 2015 through to 2016. I thought I knew what side effects to expect, but some did take me by surprise. I suffered from dry skin predominantly on my ears and nose, which added to the negative impact the drug had on my mental health, as I was very self-conscious about it. It was impossible to cover the dry patches, and makeup only drew more attention.”
“The strict rule regarding contraception and avoiding pregnancy made me more conscious than usual of the need to use protection during sex. I have never had issues with drawing blood, so the only negative aspect of the monthly blood workups, was that I couldn’t do strenuous activity before the blood was drawn. I only became aware of this when my liver function tests came back elevated, which was unusual but my dermatologist speculated this could be due to my gym session and hockey training the day of my blood test.”
“I started my second course of Roaccutane lasted 10 months, starting in the summer of 2019. During both courses, one of the worst side effects was that my lips would crack and bleed due to being so dry. This was particularly the case immediately upon waking up in the morning. I have found that La Roche Posay cicaplast lèvres works wonders, and I always carried a tube on my person during the second round. To minimise overnight dryness, I used a thick layer of Epaderm which really improved the state of my lips in the morning; I also used this on my nose and ears overnight.”
“I was already struggling with recurrent depression and anxiety when I started Roaccutane, and so I was careful to keep track of my mental state during the course. My GP increased my dose of Sertraline following a medication review, to account for the effect Roaccutane had on my existing condition.”
“I would recommend Roaccutane to a friend. I truly believe the side effects to be worth the end result, but anyone contemplating the drug should be sure to thoroughly research it first and have plenty of moisturiser ready to go.”
– Orla, 24, student
“It’s not as bad as I thought it would be, but a lower dose has helped”
“I began my treatment on 1st June 2020. I had been referred to the dermatologist by my doctor back in December, so it took a long time to actually start the treatment on the NHS (I was going to go private but got the letter through the post just as I started looking into private options). My acne has been off and on for about 5 years. I would say I started noticing it maybe at the start of sixth form. I used acnecide (think that is what’s called) from over the counter and prescribed creams from the doctors which sort of kept it at bay but never really got rid of it. I have also been on 2 rounds of lymecycline antibiotics, which in my opinion did nothing. It was only until third year of uni that my skin got really bad, which I just assumed was alcohol and uni lifestyle. I then went on the pill (Gedarel) to sort it out but had to come off it as it really affected my mood, so went back to the doctors who then referred me to the dermatologist.
“I think I was a bit skeptical going on Roaccutane as many people around me at school and growing up had been on it and had warned me of the side effects e.g. dry skin and potential mental health issues, but I did go through all of these with the doctor before deciding to go through with the treatment.”
“I am currently on my third month out of seven of the treatment. The most severe side effects are dry, cracked lips and just general skin dryness. I am also suffering from joint and muscle pain. This side effect I wasn’t really aware of coming into the treatment. I was really enjoying running during lockdown but I’ve had to reduce high impact exercise as the drug dries out my joints and I find running quite painful now, which is actually very annoying. Also, my periods are much more painful than normal, which I also wasn’t particularly aware of before starting.”
“When deciding whether the treatment was right for me, I was slightly concerned about the risk of mental health problems due to past history of low mood and depression. My doctor decided to put me on a lower dose of 40mg a day over 7 months, rather than a higher dose over a short period of time. I think this is working for me, as I don’t feel the treatment has affected my mood or noticed any other mental health issues.”
“Apart from the constant need to apply lip balm and sore legs when I wake in the morning, it is actually not as bad as I thought it would be. The side effects listed with the treatment seem to be never-ending but thankfully I’ve only suffered from a few ones. I think the timing that I started my treatment was ideal, as being at home and away from uni stresses has enabled me to track how I actually feel without the stresses of work and deadlines. I also think it’s been easier as I’m not going out and drinking as much, which I would be doing at uni, which is encouraged as the drug can damage your liver.”
“Over the last week, I have finally started to see my skin clearing up. I think because I’m on a lower dose it’s taken longer to notice a difference, but I’m looking forward to hopefully having clear skin in the future.”
– Lily, 21, student
“It seemed like a big leap for the Plan B treatment option”
“I have suffered with mild acne since my teenage years, however around 10 months ago it got much worse and quite painful. I went to the doctor for advice on treatment and was prescribed Acnecide 5% (Benzoyl peroxide). I was further told that if this didn’t work in a month or two, they could put me on Roaccutane.”
“It seemed like a big leap for the Plan B treatment option. When I said in no uncertain terms I didn’t want to go on it, they accepted this. Instead, the doctor said that they’d focus on the first course of treatment. Thankfully, I responded well to Acnecide and have stuck with that.”
“I don’t clearly remember being made aware of any potential side effects. I was told that I would be monitored if I was put on it, but nothing about the side effects. I believe I asked about them (I had an inclination of what they could be but wanted to hear the medical point of view). I was told that people respond to it in different ways and that it would be monitored.”
“Doctors weren’t clear about how serious these side effects can be, which surprised me. I knew from my medical records it must be clear that I had a history of depression and anxiety. I’ve been on medication for it for a while and still am. I just found considering Roaccutane pretty surprising. It made me question whether I was being too over-cautious, but I didn’t want to risk anything that could hinder my mental wellbeing.”
“I can’t pinpoint specifically where my knowledge came from. I think being at an all-girls school and having older girlfriends meant I knew it could have damaging side effects. I was especially apprehensive about mood swings, making you feel depressed or anxious.”
“As I have always been quite cautious of anything that may affect my wellbeing, it always stuck in the back of my mind. As I read more, I noticed the narrative that, although not fully researched, Roaccutane could have quite strong side effects. I coupled the two together and decided it just wasn’t worth the risk.”
– Alexandra, 25, PR Exec