While the skin positivity movement has seen more and more women embrace their acne, for some women spots can still be a huge source of discomfort and despair. This is where acne control medication Roaccutane can be life-changing.
This medication is often described as a 'miracle cure' for its ability to clear up spots – four out of five people who use capsules containing the stuff have clear skin after four months, according to the NHS – but is not without its controversy, with many people who take it reporting savage mental and physical side effects.
So, what's it really like to take the med? Well, this acne-awareness month, WH take a deep dive, looking at everything from the problems to the incredible success stories. Here's what you need to know about it, plus two women's experiences.
Want to get right to stories of women who have tried Roaccutane? Keep scrolling
What is Roaccutane?
Well, the first confusing thing to clear up is the name. 'Roaccutane' is actually the common brand name (like 'hoover' and 'sellotape') while the actual drug itself is called 'Isotretinoin.'
Isotretinoin belongs to a group of drugs called retinoids, which are closely related to vitamin A. It works in a variety of ways, targeting different factors that cause acne.
What does Roaccutane do to your skin?
'Very severe or scarring acne can be treated with a medication such as Roaccutane to cure it,' explains Dr Hiba Injibar, a dermatologist and founder of Dermasurge Clinic on Harley Street.
'Roaccutane capsules help severe acne by reducing the amount of natural oil made by your skin so blocked pores are less likely, shrinks the oil glands in your skin, and normalises the skin’s keratinisation [the process via which cells from your epidermis head up to the surface of your skin, becoming filled with keratin, a type of protein.]
'The medicine also helps get rid the bacteria that cause acne, and relieves redness and soreness,' she adds.
How quickly does Roaccutane work?
According to NHS England, Isotretinoin capsules begin to work after a week to 10 days.
The Medicines and Healthcare Products Regulatory Agency statistics report a 95% success rate in clearing up acne in four to six months, with around 70% of those who take it say they never suffer from acne again.
Dr Injibar adds: 'Each patient is different, and some patients get worsening of their acne in the first month however most patients start improving by the second month most patients continue a course for six months, up to a year dependant on the severity of the acne.'
Can a GP prescribe Roaccutane?
This is a serious medication, and you can only access it via a highly trained medical specialist. 'Roaccutane or Isotretinoin can only be prescribed by a consultant dermatologist' says Dr Injibar.
'I treat acne patients privately and in the NHS regularly, that have been referred by their GPs for Roaccutane after basic treatment failed. Isotretinoin has the advantage of curing acne in 75% of the patients who take it.
Prescribing Roaccutane requires a thorough examination and history taking to find out if you are a suitable candidate for the treatment, baseline blood tests, consent forms, and contraception in women of childbearing age because of it’s high chance of damage to the foetus, and monthly followups throughout your treatment,' adds Dr Injibar.
How does Roaccutane make you feel?
While there is quite a hefty list of side-effects to be aware of when taking Roaccutane (more on that, later) one of the most well documented is the potential for mood changes and depression. While significant mood changes have been reported (from severe depression to suicidal thoughts) it's important to note that these are rare and in most cases, doctors agree that they notice an improvement in mood - as their patients start to see an improvement in their skin, too.
If you are in an urgent mental health crisis, find your local NHS helpline. If you need to talk to someone, call the Samaritans on 116 123
'Scientific studies have so far not been able to actually prove that Roaccutane causes psychiatric changes or suicidal thoughts. However, your doctor should keep a close eye out in follow up consultations monthly. Almost all patients feel much happier though once their acne starts improving and clearing up,' adds Dr Injibar.
What are the side-effects of Roaccutane?
One of the downsides to taking Roaccutane is the many side-effects it can come with. While these can significantly differ for everyone, it's important you're aware of all the side-effects and can recognise them, should you be affected.
'They can include your skin and lips may become very dry and sensitive sunlight during treatment. You may also experience dry eyes, nosebleeds, headaches ( very rare) and joint pain but more so fatigue and back pain,' adds Dr Injibar.
Will Roaccutane dry my skin out?
In general, dryness of the skin, lips, and eyes is the most common side effect for most people. Using a gentle, non-comedogenic moisturiser (one that doesn't block your pores) and lip balm regularly can help. In more severe cases, this dryness can turn into eczema and may require additional treatment. Nosebleeds may occur if the inside of the nose becomes very dry.
As a result of the skin becoming dry and cracked, the risk of skin infection is also increased. Wounds may also take longer to heal and the skin may feel fragile and peel with additional friction.
While taking isotretinoin (and for six months afterwards) your skin will be more delicate than usual; hair removal using waxing, epilation, dermabrasion, or laser treatment, as well as tattoos and piercings should be avoided.
Isotretinoin may increase your skin’s sensitivity to the sun. You should therefore avoid direct sun exposure while taking this medication and use a SPF 30 or higher every day.
Rarer side-effects can include:
Temporary hair thinning may occasionally occur.
Vision impairment, in particular the ability to see at night.
Isotretinoin may sometimes cause an increase in the levels of fats in your blood (which can lead to inflammation of the pancreas), or inflammation of the liver. Blood tests will be requested during treatment to monitor any potential side-effects.
Isotretinoin can lead to changes in mood and/or behaviour in around one in 1,000 people, and less commonly, thoughts of self-harm and suicide. If you have ever experienced depression or suicidal thoughts (or any other mental health problem) this should be discussed with your doctor before starting treatment.
In rare cases, it's possible to have a serious allergic reaction (anaphylaxis) to isotretinoin capsules.
Can you take Roaccutane while pregnant?
You must not take isotretinoin in pregnancy. If a person becomes pregnant while taking isotretinoin (or four weeks after they finish the course) there is a high risk that the baby will be harmed with severe and serious defects – and there's also an increased risk of miscarriage.
If you do become pregnant, or suspect that you may be pregnant, you must stop the medication immediately and contact your doctor, so you may be referred to a specialist pregnancy clinic. You should not breastfeed while taking isotretinoin and for a month after completing treatment.
You also can't donate blood when taking isotretinoin and for at least one month after stopping the medication in case the blood is given to a pregnant woman.
All women with child-bearing potential should be entered into the Pregnancy Prevention Programme whilst taking their course of isotretinoin. This will include using at least one, and preferably two, forms of effective contraception for at least one month before starting treatment. Each month you will also have to attend a clinic for a pregnancy test and you will have a final pregnancy test five weeks after finishing treatment.
Sophia Harding, a 31-year-old from London and founder of skincare brand, Palm of Feronia (@palmofferonia) details her Roaccutane journey
'I had 'perfect' skin when I was a teenager. I thought I was lucky, given that all of my family, including my brother, dealt with pretty severe acne during their adolescences.'
'Things changed when I came off the contraceptive pill, at 20, after being on it for the five years prior–I was prescribed it to help with the symptoms of polycystic ovary syndrome (PCOS.) Then: bang. I developed cystic acne, mainly around my jaw, with a smattering on my forehead.
For the next 10 years I tried everything to clear it: treatments from the doctors, different creams, tablets, antibiotics. Nothing worked and it kept getting worse. When I was about to turn 30 the problem became more than aesthetic–it was painful. I would wake up to blood all over my face, from where spots had burst. It affected my social life: In pictures with friends I’d tell them they needed to edit out my spots. I would obsess over how it looked. For it to happen in my 20s when other people weren't experiencing that made it harder. I used to think, 'Do people just think I'm not clean, that I don't wash my face or I eat rubbish?
'I’d never had any luck getting Roaccutane on the NHS, as I was told by the dermatologists I saw that my acne 'wasn't bad enough.' I found that professionals are very reluctant to put you on more extreme treatments because the side effects can be so horrible. As well as super sensitive skin, some people report mental heath issues like signs of depression.'
'However, my skin was affecting how I felt about myself to the extent that I went private and was prescribed it. Thankfully, I managed to take my prescription to the NHS, because it’s so expensive. When I went back, one of the NHS dermatologists said to me, "I can't believe we've not prescribed you it before now." She was really apologetic.
I started the treatment and it was... intense. Straightaway, my side effects were outrageous. The skin over my whole body dried out. I couldn't wear make-up. I stayed on the treatment for 10 months and, despite the problems, it did clear up my acne. I understand that some people have dreadful experiences on it, but for me, it was life-changing.'
'At 18, I hadn’t "grown out" of my bad skin, as I thought I might. Arriving to rehearsals at the Brit School for performing arts with layers of foundation to be greeted by fresh faced, natural and seemingly confident students was challenging, let alone going to auditions. By 25, my acne still persisting, I was utterly fed up having tried everything under the sun to alleviate it.
Antibiotics would clear for a few weeks, only for my skin to then go back to square one. My acne started to appear as clusters on my cheek and chin, changing from something I could disguise with makeup to being impossible to hide. After a successful referral to a dermatologist the decision was made – I would be prescribed Roaccutane. I’d be lying if I said I wasn’t nervous, but those feelings were minimal compared to the hope and excitement of finally having 'beautiful' skin.
I started the treatment in August 2017 and, after six days, I knew something was wrong. I tried to convince myself that my mind was playing tricks on me but on day eight, I walked myself into A&E. My head was throbbing, my vision kept blurring and the nausea was unbearable. I felt off balance, dizzy, stiff in the neck and couldn’t think straight. Within 24 hours, I’d been diagnosed as the 1 in 10,000 who contract Benign Intracranial Hypertension – a build-up of pressure around the brain – following a course of Roaccutane. I had a lumbar puncture to remove fluid, reducing the high pressure.
After a traumatic few days, my main concern was how I’d treat my skin without Roaccutane. This quickly became an afterthought, as I was soon to be unlucky again. One in three patients who have a lumbar puncture will suffer with low pressure headaches as a result. I couldn’t decide what was easier to manage: the high-pressure headache was challenging but the low-pressure headache required me to lie flat for three months. I was unable to sit or stand and to go to the bathroom, I had to crawl as close to the ground to reduce suffering the sensation of low pressure in my head.
It was a long and exhausting recovery period but in January 2018, I was finally clear of the pressure headaches. As a result, I was diagnosed with Constant Chronic Migraine, suffering for a minimum of 15 days each month.
By August, I was in control of my headaches so decided to go travelling, but before leaving I’d had a flare up and taken some prescribed steroids. My neurologist, dermatologist and I had hoped that the combined sunshine and lack of stress would be positive, but things went from bad to worse. Despite being heavily advised against doing so, I bought some over the counter steroids in Bali.
On returning to the UK, my dermatologist advised me that Roaccutane was still the only option to save my skin. The fear of developing intracranial hypertension again was high, but my acne was so painful that I agreed to a second course. The plan was to start with antibiotics and steroids, alongside a low dose of Roaccutane (20mg, versus the standard 60) that would gradually increase.
After 11 days on the drug, my second reaction began. I was in immense pain – my face felt like it had a racing pulse. It was throbbing, burning and felt as though the skin was being stretched. It kept swelling outwards and under my eyes became puffy and inflamed. It was so painful that it would wake me up in the middle of the night, leading to a trip to A&E.
I was given intravenous antibiotics and attended a clinic with various dermatologists to discuss how best to manage my situation. I felt like a fish in an aquarium as they came to look at my face and discuss my condition. The realisation that I was a special case and the reality of not being able to follow a textbook for my treatment made me fearful.
It was agreed that my skin was too far gone and if there was any hope, we would have to push through with Roaccutane for the third time, accompanied by a significant amount of steroid. I started with a 10mg dose every other day and worked my way up to 60mg between March 2019 and August 2020, when I was taken off the drug as it appeared to be raising my cholesterol.
At this point, the Roaccutane had worked: my acne had gone and I was left with redness and scarring, but not active spots. My dermatologist hopes the worst is over, but I have been made aware that I might need a top-up course of the treatment, next year.
I still deal with myriad side effects, however. I have never fully recovered from Intracranial Hypertension as I now suffer with migraine, usually once a month; my lips are still dry; I experienced significant hair loss and my strands are growing back curly, rather than straight, which is odd to get used to; my vision is not back to normal and starting to exercise again was like starting from the beginning.
Before Roaccutane, I would go to the gym three times a week but I'm finding it difficult to build up strength.
This has been a personal trauma and, honestly, I don’t know if I’ll feel fully confident in my appearance again. Every morning I wake up in fear that my skin will be back to square one and the daily mirror check is pure agony.
How do I feel about Roaccutane, now? I am conflicted. The drug has ultimately saved my skin, but that's been at the cost of causing new and ongoing side effects. I would obviously have preferred another treatment option to avoid the side effects, but there isn't one. I hit rock bottom and multiple dermatologists told me it was my only option, so I would still make the same choices if I had my time again.
I wish there was another drug on the market that had a similar rate of effectiveness with less complicated side effects. Having said this, I was unlucky as there are lots of people who take Roaccutane for just six months and finish with clear skin and no long-lasting problems.
When you fear never seeing your face as you once knew, desperation kicks in and side effects become a small price to pay comparatively. Nothing would have saved my skin the way Roaccutane has, and I hope to feel better, with no lasting side effects as the drug leaves my system.
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