Roaccutane: 1 in 10,000
When it comes to side effects, it’s likely we wouldn’t consider being the 1 in 10,000; I definitely didn’t, until I became the one.
Most of us will have suffered with problem skin at some point in our lives, whether that be a single spot that’s appeared before an event or ongoing acne. This will resonate differently for each of us but I can say one thing for certain – having experienced severe acne - it becomes emotionally exhausting and massively impacts your mental health.
I’ve always loved makeup and started to experiment in my early teens but quickly began having breakouts. I did what any 90’s kid did at the time and invested in some dream matte mousse (if you know, you know). I put my bad skin down to the time of the month or a big weekend and hoped to grow out of it in my adult years.
Following an incredible four years at The BRIT School I was keen to continue training as an Actress but at 18, I hadn’t grown out of my bad skin. Arriving to rehearsals with layers of foundation to be greeted by fresh faced, natural and seemingly confident students was challenging, let alone going to screen auditions and trying to achieve the perfect flawless but natural look, with the most expensive foundation I could find. Whilst at University I started dating my first serious boyfriend and the lack of confidence in my skin grew. I would set an alarm for 5am to remove all my makeup and reapply it, then get back into bed to wake up as the ‘perfect’ woman - he was on to me fairly quickly because apparently nobody has naturally sparkly eyelids?!
THE MIRACLE DRUG
At 25, I was utterly fed up having tried what felt like everything under the sun. Topical treatments, steaming, toothpaste and sudocrem didn’t cut it. Antibiotics cleared it for a few weeks, only to 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 an eyesore on my face. After a successful referral to a dermatologist the decision was made – I would be prescribed Roaccutane.
Roaccutane is known as the miracle acne drug and is only prescribed to those who have exhausted every other avenue; it's controversial for its multiple side effects but has a 95% success rate in clearing up acne.
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. My family were understandably concerned after the lengthy discussions surrounding side effects, but I was willing to risk it all for the end result.
Medical term: Benign Intracranial Hypertension
In October 2017 I started the treatment 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, I would fear coughing or sneezing as it would make the pain worse, 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 with 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 3 months. I was unable to sit or stand and to go to the bathroom, I had to crawl as close to the ground as possible 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.
If you’ve suffered with migraines, you’ll know how difficult they are to manage. Despite this, I’d secured a new job and was determined to live my new normal without anybody knowing. I soon realised I couldn’t travel on the tube without earplugs - the pressure change was uncomfortable and they offered some relief. Trying to disguise these whilst travelling to meetings with colleagues became increasingly difficult. After 3 months, I passed my probation at work in line with one of my worst migraines. Arriving at the office in sunglasses and earplugs, I finally revealed to my boss what had been going on. I continued to battle with migraines and problem skin, but my head always took priority. I was so grateful to be through the worst and didn’t ever want to experience something like that again.
In August 2018, I was in control of my headaches. After the breakdown of my relationship, I made my best life decision to date: to spontaneously flee the country with my best friend and travel the world.
PLEASE HELP: IN GILLI-T
Backpacking took us through New Zealand, Australia, Bali, Vietnam and Thailand, but sadly my skin didn’t enjoy the adventures as much as my soul did. Before leaving for our trip, 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. I had a golden tan and was the happiest I’ve ever been, but after 9 weeks I knew something was wrong.
10th Jan 2019 I To: Dermatology I Subject: Please help: in Gili-T
Happy New Year! I wanted to email you as I’m so worried and upset with my face. It’s got worse! A lot worse, it’s so sore and feels like it has a pulse. Is there any way you can send me a prescription so I can get some steroids out here? I’m so scared this will scar my face forever. Any advice greatly appreciated.
Following the photo I attached to the email, my dermatologist advised I came back to the UK immediately. They were unable to prescribe anything overseas and my skin was in a bad way, but with 5 weeks left of my trip I didn’t want to cut it short. Despite being heavily advised against doing so, I bought some over the counter steroids in Bali; it was a time of desperation and I just wanted to ease the pain and enjoy my travels.
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. Luckily it wasn’t intracranial hypertension but I was in extensive pain - I didn’t know that it would only get worse.
4th March 2019 I To: Dermatology I Subject: Roaccutane
I wanted to make sure my symptoms are normal as I’m worried. I’ve been on Roaccutane for 11 days and I have puffiness and swelling under one eye. I wake up in the early hours as my face is throbbing / tight / burning and the discomfort doesn’t ease until I take steroids. My face is swelling and I’m in pain, but I’m aware it can get worse before it gets better on Roaccutane.
I was called for an appointment immediately and advised to stop Roaccutane for a week, whilst taking antibiotics to relieve pain and reduce inflammation. Sadly, the Roaccutane was still working in my body and things escalated further. My face felt like it had a racing pulse and was throbbing, burning and swelling outwards. It was as though my skin was being stretched and my eyes became puffy and inflamed. It got so painful that it would wake me up in the middle of the night, leading to a trip to A&E.
8th March 2019 I To: Dermatology I Subject: A&E: Swelling - Roaccutane
I have admitted myself to A&E this morning - I woke up at 3:45am in serious pain and the swelling is out of control; I don’t even recognise my face. I have pain relief, but they are unsure about next steps as they don’t want to counteract anything we’ve put in place.
A medical sign in which the face develops a rounded appearance due to fat deposits on the sides of the face, often associated with steroid treatment.
A dermatologist came to my rescue in A&E where I was given intravenous antibiotics. Following this, I attended a clinic with various dermatologists in the area, to discuss how best to manage my situation. 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. Alongside my already swollen skin, the steroid meant I quickly gained weight and developed Moon Face. I tried to make light of this term using moon emojis in my WhatsApp’s, but it’s had a long-lasting effect on my confidence, and I wouldn’t wish it on anybody.
Each month on Roaccutane required mental and physical adjustments to my new normal. Most people will take this drug for 6-8 months, but of course, I don’t define as most people. Due to regular complications I was fortunate enough to have weekly hospital visits to monitor side effects. The severity of my acne meant I was due to take an extended course of Roaccutane, but after 18 months my body gave in and rejected the drug through raised cholesterol. I began my Roaccutane journey in 2017, restarted it in February 2019 and was relieved of the drug in August 2020.
DAY TO DAY
I have suffered with the majority of side effects from this drug; the most testing being the emotional strength it takes to keep going with the treatment.
The first challenge was going about daily life with an ‘abnormal’ face. The thought of not wearing makeup to work in a client facing job was daunting, as was the daily commute on the Northern line.
People would stare and there were days I wanted to wear a sign saying, “I’m aware of what is on my face.” There were sympathy smiles, children who would point and those who would ask “Have you tried changing your skincare routine or diet?” If you’ve suffered with acne, you’ll understand how frustrating these questions become.
My lifestyle quickly changed; I’ve always been the social butterfly but felt ashamed to be out in public. I was keen to start dating again but felt like a fraud - the photos on my Instagram were taken when I was heavily made up. With the inability to exercise due to severe body aches and muscle weakness, I began to gain weight. This, coupled with my ‘Moon Face’ meant I found myself unrecognisable.
As an optimist, I decided to switch my mindset because the journey was set to be a long one. I realised there were people far less fortunate than me, and I didn’t want to miss out on making memories. Everyone was very patient and understanding, and despite my clear knock in confidence, I began to do all the things I loved.
Alongside the physical changes, 18 months of no alcohol was challenging (it is heavily advised against whilst on Roaccutane), but I found the beauty in making memories without it. Festivals, clubs, girls’ holidays, dates, birthdays, Christmas and raving until the early hours were different, but I was grateful to be through the worst.
SIDE EFFECTS SUMMARY
To name a few, during my treatment to date:
• Benign Intracranial Hypertension resulting in a lumbar puncture and low pressure headaches
• Dryness of the skin and lips - Eucerin skin balm is a must
• Dryness of the scalp, mouth and nose with occasional bleeds
• Increased thirst and dehydration
• Exhaustion and significant lack of energy and motivation
• Mood swings; regularly feeling emotional and irritable with increased anxiety
• Hair dryness, loss and thinning
• Hair growing back frizzy and curly, despite always having naturally straight hair - be careful what you wish for!
• Noticeably thin and brittle skin with the inability to wax, have facials or any eyebrow treatments for 8 months+
• Chronic eye dryness and inflammation; Blepharitis and mild Distichiasis as result
• Under the care of Moorfields Eye Hospital, I have a daily eye care routine and am unable to wear regular eye makeup without inflammation
• Severe body aches, muscle weakness and joint pain; I had to take Adcal throughout my treatment to maintain bone health
• Unable to exercise, walk or stand for extended periods of time; this contributed to rapid weight gain
• Full body redding of the skin and increased sensitivity to sunlight; unable to be in any direct sunlight
• Raised cholesterol resulting in early termination of Roaccutane
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 agonising. I was never camera shy but now it’s a reminder of how much I have physically changed during this time.
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 have preferred another treatment option, 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. 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 complications as the drug leaves my system. After my initial 8 month recovery, I can consider laser treatment for scarring but at this stage I’m just grateful for how far I’ve come.
Life has a funny way of teaching us lessons; whilst taking Roaccutane all I wanted was to cover my face - we now find ourselves in a global pandemic where masks have become the norm. On reflection, this journey (albeit traumatic) has contributed to my perspective, resilience and compassion. It’s been a tough lesson but those closest to you really show up during these times, with endless love and respect that goes far beyond appearance. There is true meaning behind ‘everyone fighting their own battles’ so I hope this article is a gentle reminder to be kind, always.
A special thank you to Mum, Anna, my Dermatologists Bernard & Angela, and my incredible family and friends for your endless love and support.