Personal

Roaccutane: my journey: it can change a life or end one.

Roaccutane seems to have granted me my very own happily ever after. So far that is. I finished my treatment a little over six weeks ago and have only had one single (but pretty mighty) spot since. This blog post is about my own personal experience of the detrimental drug; the side effects, highs/lows and of course, the outcome. I’ve got to admit, this is a pretty personal piece to be uploading online and I’m not going to spare any details because I know that the only comfort I got while on the drug was the blogs I found online – the more in depth, the more comforting.

Quick summary for those of you reading who may not fully understand the drug (I have previously written a post on the drug from a scientific point of view about a month ago).

The drug is known by medical experts as ‘Isotretinion’ but no one calls it that anymore because of its bad press and it being banned in so many countries – however, I’m not going to repeat myself as all the information on statistics and figures is on the original blog post. So quickly, here’s how it works:

1. It dramatically reduces the size of the skin’s oil glands (35%-58%) and even more dramatically reduces the amount of oil these glands produce (around 80%).

  • 2. Acne bacteria (P. acnes) live in skin oil. Since oil is dramatically reduced, so is the amount of acne bacteria in the skin.
  • 3. It slows down how fast the skin produces skin cells inside the pore, which helps pores from becoming clogged in the first place.
  • 4. It has anti-inflammatory properties.

The back story…

I first began suffering from acne aged ten years old. Primary school. I developed spots before I developed boobs – big bummer for any girl. Please note there is a huge HUGE difference between spots and acne. Spots generally describes a few pimples, however acne is recurring, severe and actually quite painful. This acne, though constant did seem to change over years, some years were worse than others and my skin texture was always changing – so were the spots. Whatever treatment I smothered my face in my skin seemed to adapt. I went from having oily skin to dry skin, yellow heads to black heads and then actual cysts. I’ve had every time of spot you can possibly google. Lucky for me these spots seemed to have only two favourite areas: my face and also, my back (please note the sarcasm).

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The acne continued to change and worsen into my teenage years. Aged (estimate) thirteen my mother took me to see my doctor who quickly referred me to a dermatologist – best thing to ever happen in my life. Though this wasn’t an easy or quick process.

When you’ve been tackling acne there really only seems to be one thing left to do when the over-the-counter crap doesn’t work – pile on the makeup. I must’ve spent easily £2,000 over the past decade on makeup, this is no exaggeration. Cheap make-up won’t cover it. Expensive make-up will and some may not even irritate your skin but it costs a lot and you most likely have to wear a lot to get that ‘air brushed look’. However, I was piling so much on that ‘air brushed’ just turned into ‘paint brush’. But, I don’t regret it. I honestly believe that was money well spent because otherwise I don’t know how I would’ve left the house.

Okay, it’s time to skip forward abit so I don’t lose your interest. The dermatologist offered me the wonder drug ‘ Roaccutane’, however I was already suffering with poor physical health and I was still very young (aged thirteen) to be considering a drug with such a bad reputation. So, my mother and the dermatologist agreed to try me on other treatments. The list is endless and to be perfectly honest I cannot even remember every acne treatment I’ve been on, some include: Dianette, Zineryt (NEVER USE THIS -even for minor acne it’s absolute rubbish and damages skin), Duac, Differin, Tetracycline and countless others. Then, aged eighteen and fed up I decided to go back and say yes to the drug that had cleared up so many of my friends acne – though non of them recommended the drug and most weren’t able to finish the course.

The start…

Now, when you start taking the drug you’re made to sign a few things (disclaimers) to agree that you fully understand the side effects of the drug and sign up to a ‘Pregnancy Prevention Programme’ as, like Thalidomide, the drug causes extreme abnormalities during pregnancy and sometimes even miscarriage. Basically, I sat there nodding along while the dermatologist warned me of suicide, miscarriage, disabled babies, Crohn’s disease, dryness (a lot worse than it sounds but we’ll get to that), liver failure ect. However, I was basically a girl desperate for clear skin that I would’ve signed a deal with the devil at this point – I’d probably say it’s closer to playing Russian roulette with the devil, it’s pot luck  you’re going to end up the other side. I was hardly going to turn down the wonder drug like I did years before.

*It’s important here to note that the prescription is given on a four weekly basis, as the drug is so severe you must return for a check up every four weeks or you will not be supplied the drug*

The personal bit…

I was on the treatment for six months. Though, I will openly admit for the last month I missed taking a lot of the capsules most days because of the side effects I’m about to describe.

I was prescribed a 60mg dosage, the highest dose allowed for my weight.

In the first month the side effects started within the first week which shocked me but I read online that this was normal. My lips become so dry that they would actually bleed when I brushed my teeth. But, I was prescribed a special lip balm (the name escapes me) on the same slip for my first load of Roaccutane so I tried to stay positive. By the second week I was crying uncontrollably – to the point were my friends, colleagues and family were worried about me. Nothing had happened to trigger the feelings I was suddenly suffering from – but sadness consumed me. We’re talking lying in the dark for hours and wailing. Shaking with tears. Now, really I could’ve stopped then and you may read this thinking I’m silly but if you’ve got acne then you’re going to be nodding along and hoping this gets better because you too want an excuse to try the drug.

During month two and three my side effects seemed to calm down. My lips were still sore and bled most mornings and my mood wasn’t great but I was blessed with a very supportive family and boyfriend. Though not a single person in my life agreed with my decision to take the drug they all supported me. My skin was showing no obvious signs of improvement but I had been told the longer you’d been suffering from acne the longer the treatment may take.

Somewhere during month four things plummeted. I was sent home twice from work within half an hour of getting there because I’d cry hysterically. In retrospect I believe that I was feeling some anxiety and the certain situations triggered these anxious feelings that then triggered my (what I can only describe as) depression. The things I’m going to write now are to inform and advise other people thinking of taking the drug but that doesn’t make them any easier to write so please read this sensitively – thanks. I have always been a relatively confident person who’s positive and happy, I’m happy whether I’m surrounded by people or if I’m completely alone. This changed, drastically. One day at work I was told that I could leave because I was crying in the staff room (I hadn’t even taken my coat off since arriving), even though I was so uncontrollably upset I stayed for a further forty minutes because though I was embarrassed to be weeping at work for no reason I also didn’t want to be alone. For some reason that day it took all my courage to walk to my car. These are not the feelings of a girl coping.

My physical side effects began to grow more severe too. I couldn’t wear contact lenses because it was so painful and when I went to my optician my eyes were so dry that my contacts were rubbing the surface of my eye and small bleeds were starting. I was advised to stop wearing contacts in case of permanent damage. My stomach was painful and bloated constantly. I vomited easily and a handful of times a week though I had stuck to the drugs orders of abstaining from alcohol. These side effects continued and worsened with each week.

Then I started to attend university. My flatmates were aware of the drug I was on and repeatedly assured me that my skin was clear. During months five and six of my treatment I knew it was logical to come off the drug, reading this now I don’t have much sympathy for myself but when you’ve come so far into a treatment which is working you just kind of hold onto that.

My body was riddled with Roaccutane but my skin was clear. Hell, my skin still is clear. Which for me, is life changing.

The last eight weeks on the drug were arguably some of the toughest weeks of my life. I was suffering from countless physical symptoms: I felt so nauseous all the time that I worried about pregnancy because I’d never felt so dizzy and sick in my life, I suffered nosebleeds, passed out a few times, vomited after meals, one day everything was so dry that my tongue split down the middle. This list of symptoms is not to gain sympathy but to raise awareness. However, these symptoms were nothing compared to my state of mind…

Roaccutane can stimulate suicidal thoughts. Though I did not feel suicidal I did have ideas, bad ideas that I would never rationally even think of. But they were there and they were real feelings that scared me, feelings that scared me into pretty much missing my 60mg a day prescription every day for the last four weeks of my treatment. My mind would react irrationally to perfectly normal situations. Creating scenarios in my head of taking my own life which I didn’t  even want to do. These are not feelings exaggerated by myself for attention, in 2013 the Telegraph reported masses of patients reporting the same feelings as me.

Latest figures from the Medicines and Healthcare Regulation Authority show that the active ingredient of the drug, Isotretinoin, has been implicated in reports of 878 psychiatric disorders, including 44 suspected suicides, since it was registered in 1983.

Thousands of cases have been brought against Roaccutane since it first became available decades ago. Hundreds of publicised suicides have been linked to the drug.

Nobody knows the long term side effects of this drug but aren’t the short time side effects enough alone to spread the ban from not only the US but to the UK too? I truly believe this drug should also be banned in the UK – not because of any scientific experiment or the statistics, but because of my story and many others. For the lives that have been lost.

I truly believe this is a drug that can either change a life or end one. I was fortunate to have caring friends, a fantastic family and a supportive boyfriend.

6 comments

  1. What a great read Charlie!! The way you have wrote it was so moving and really grabbed my attention. What a step, i’ve been reading some of your stuff and i think they are all great. And doing something that is so personal to you, really shows that you want this! Alway knew you’d be a journalist anyway 😉 but it was lovely and shows your not scared to write about anything and as your doing that you shouldn’t be. You go Charlie, you go girl.

    Liked by 1 person

    1. Why thank you so much for taking the time to read my piece – means a lot! Thank you! Please keep reading!!
      Really love you taking the time to comment on my piece too!!!! So sweet of you it really is!
      Mwah!

      Like

  2. Such a great post. Did you ever notify your dermatologist about these thoughts? I hope you’re all well know. X

    Like

    1. Thank you for taking the time to read it! Yes, I told my dermatologist about these thoughts/side effects but as I recognised the feelings as side effects and have a very supportive family so they just kept me on it x

      Liked by 1 person

      1. That’s good to hear. Was just worrying I case the same thing happens to me, as if still like to continue with the medication, unless it got really serious. It’s a great read. X

        Liked by 1 person

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