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Friday 10 July 2020

My Accutane Experience: Did It Work, Side-Effects, Getting It On The NHS (day 19)

#30dayglowup - Day 19


Did Accutane clear my skin and was it worth the severe side-effects? Let's take a look at my experience with the 'acne-curing' drug...




As I’ve mentioned quite a few times on this blog before, I have undergone a round of Accutane to clear my skin after many unsuccessful acne treatments. For a lot of people Accutane is know as a ‘last resort’ acne treatment due to its high risks and many, potentially severe, side effects. After trying out many different options such as birth control, topical treatments and antibiotics for my acne with none of them having lasting effects, I wanted to undertake the long, grueling process of taking Accutane as an acne cure.

 

One thing I want to make clear is that Accutane is not easy. It’s many months of hospital trips, blood tests, pregnancy tests, side-effects, purging, high levels of SPF and many other things. I knew it was worth the risks for me because acne was so negatively affecting my mental health and self-image that I was willing to sacrifice a lot, but even though I’m glad I did it now the process was draining at times. In this article I’m going to be detailing my entire experience with the drug from how I got on it, the process of renewing my prescriptions to my side effects and advice. If you’re wanting to take the plunge with this drug, give this a read through as you may consider different perspectives which impact that decision.

 

What is Accutane and how does it work

Accutane or isotretinoin (Also called Roaccutane in some countries) is an oral medication which is a type of retinoid, meaning it’s a type of vitamin A. It works by shrinking sebaceous glands in the skin and thereby the amount of oil that your skin produces, preventing it from clogging up pores and causing breakouts.

 

You take the medication once or twice a day for normally 4-6 months and most people only need one round to fully clear up the skin. In the UK it has to be prescribed by a doctor and the process of getting Accutane, for me at least, was very thorough and difficult.

 

How I got Accutane on the NHS

I started off at my GP level after having tried many different acne medications where you then get referred to a dermatologist. This is often the most difficult step in getting Accutane on the NHS because a full round of Accutane uses up a lot of time and resources and they’re understandably reluctant to clog up that system. You’re normally only referred if your acne is either severe or persistent, and since I had tried many other treatments at this point it was clear that mine was the latter. I also explained to the GP how my acne was affecting my mental health and made it clear that I understood the potential side effects on Accutane and was still willing to try it.

 

I was then referred to a smaller hospital to another GP who asked similar questions and then he referred me onto my local hospital with a dermatology unit. I don’t think that this step is the norm – I think it was just to fully make sure I was committed and wouldn’t waste any of the hospital’s time. I then had to wait two months to get a consultation and then another month to get my first prescription after taking a blood test, so the whole process from talking to my GP until actually taking my first pill took around 4 months.

 

What you need to do to be allowed your prescription

Since Accutane brings a risk of severe birth defects if you get pregnant, you need to be on two forms of birth control (Usually hormonal and physical) and get a pregnancy test every month. Mine was done at the hospital, I just peed in a cup in the bathroom and the nurse took it away to be tested. Additionally, since Accutane puts a lot of strain on your body, your lipids, kidney and liver functional levels need to be regularly tested via blood tests. This can be done at your GP but for me I could do it as a walk-in at the same unit in the hospital. I did a test a month before I was due for my prescription, one after the first month and then every three months after that.

 

Since the progress of Accutane needs to be monitored as well as any detrimental mental health effects, you need to be having monthly appointments with the dermatologist. So, in summary to get my prescription each month I needed to:

  • Have had the prescription signed off by the dermatologist
  • Got a negative pregnancy test result
  • Had adequate results from your blood test (Every 3 months)

This meant that every month I needed to go into the hospital. Since my treatment lasted for so long (8 months), I ended up having to come back from university twice times within my first semester in order to complete my treatment and pick up my prescriptions, and before that I had to time the appointments within my A level exams. Make sure you bare any of this in mind if you’re wanting to start Accutane.

 

Side effects I experienced

Dryness

This is a given if you’re going to be on Accutane. Your skin, lips, hair, eyes everything are going to dry out. For me it was pretty tolerable up until I went on 80 mg and then it became more uncomfortable. Try and get the best products you can to keep yourself moisturized, drink more water than you think you need to and avoid too much salt in your diet.

 

Remember it won’t just be your skincare routine that you might need to change, you may need to moisturize your hair more or apply eye drops or keep your cuticles hydrated. Accutane affects all of your skin so be sure to consider everything.

 

Purging

This was the worst thing about Accutane for me. My skin purged so badly and it had a disastrous affect on my mental health and self-image. I purged around month 2 which I discuss more below, so think about timing your Accutane treatment so that it’s not falling on an important date when you want to feel most confident. Not everyone purges so you might be alright, but it is common with Accutane so definitely consider it.

 

Joint pain

My back pain was not fun. Bearing in mind I was 18 when I underwent the treatment and hadn’t experienced anything like this before, I struggled with it a lot. Your joints are (No surprise) more dry than usual and don’t get lubricated properly, so you may get pain where you’ve never had it before

 

I began experiencing lower back pain about halfway through my treatment and it took me a while to realize that it was a side-effect. It made sport, sleeping and just general life very difficult and it made me question what was wrong with me because I was still young.

 

Sun-exposure

If you’re on Accutane your have to be very careful with the sun as your skin becomes more sensitive to UV radiation. I am very pale and burn easily anyway, so I had to be very careful with how much I exposed myself to the sun. I tried to stay inside as much as possible and always wear SPF when I went outside.

 

Mood

I was lucky in that I didn’t experience any depressive thoughts from taking Accutane, whereas a lot of people do. This is part of the reason why, in the UK at least, you’re so closely monitored by a dermatologist to check how the Accutane is affecting you mentally. Some people even experience psychosis and suicidal thoughts, so it’s not something to be taken lightly.

 

For me, I was already so badly impacted by my acne that I felt like anything that cured it would have an overall positive effect on my mental health, even if it was hard in the short run. Accutane affected my mood because of the other side effects making me feel down, but other than that my mental health wasn’t any different to usual.

 

My Accutane timeline: Doses and Effect on my acne

I’m going to break down my Accutane timeline each month about my dosage and how my skin was responding, and then below that summarize the severity of the effects with 10 being the worst and 1 very minor.

 

Month 1 (40 mg)

I started my first month on 40 mg a day (2 x 20 mg capsules) as they tend to start you on a lower dose to ease you in. For the first four weeks I didn’t really see much change in my acne or my skin overall, maybe due to the loser dosage.

  • Dryness 2/10
  • Back pain 1/10
  • Increased sun exposure 2/10
  • Purging 2/10

 

Months 2 – 3 (60 mg)

After one month my dermatologist and I agreed to up my dosage by 20 mg to begin to see more of affect. This would normally have been my max dosage as they tend to base it off per kg of body weight (If my skin wasn’t so cursed). Month 2 was hell. I’m not going to try and hide it, the purging was so incredibly harmful for my mental health I have never felt worse about myself than at that month. I went on a post A-level trip with my friends and at lot of my memories about it on reflection are ruined because I know how much I struggled to not hate myself and my skin. I had huge, red, inflamed bumps all over my face in areas I’d never seen them before – despite having moderate acne, I’d never previously experienced cystic acne until then.

 

Please think about purging before your start Accutane! Think about when it’s going to land in the year and if it will be over any significant events. I genuinely hated leaving the house and hated looking at myself in the mirror and I feel such a deep sadness whenever I look back on this time because I couldn’t enjoy the things I was doing. It was emotionally crippling at what should’ve been one of the best times of my life. I’m not saying this is definitely going to happen to you but it’s something to think about. I wish I had photos now of my face to show you just how bad it was but at the time seeing photos of my face was my worst nightmare.

 

Also, because of the increased risk to sun exposure from my skin thinning I was wearing very high SPF everyday on the holiday, which was uncomfortable, and layers to cover up my skin. One time we were at a pool in the sun all day and fell asleep, and the sun burn when I woke up was excruciating. I also had an increased sensitivity to light so I always had to wear sunglasses to avoid headaches, and my eyes got sore from being in places that were very bright.

 

This, unfortunately, was also the point where I began to experience lower back pain and stiffness which took me a while to realize was a side-effect of taking Accutane. Doing sport was very painful as my lower back was hurting a lot from movement. It also made sleeping more difficult and overall I just was not having a good time at this point.


  • Dryness 4/10
  • Back pain 5/10
  • Increased sun exposure 5/10
  • Purging 9/10

 

Months 4 – 6 (60mg)

At this point my skin did begin to clear up but not fully. It was probably at a similar level to pre-Accutane which was very disheartening. I remember every time I’d get a new spot, I’d think maybe this is the last one I’m going to get and even though it never was, it was that hope that kept me going.

 

Month 6 had a very low point when I contracted impetigo around my mouth. This is something you should be aware of due to having very dry skin and having the cracks around your mouth act as open wounds – infection is able to get in there. Not only was I still crippling self-conscious about my acne, I now had a very unpleasant looking impetigo infection on my top lip. I was also taking antibiotics on top of the 3 Accutane pills a day which was a lot. There’s nothing I could’ve done differently really to avoid this happening as I don’t know where I got the infection but looking back on it, I feel so genuinely sorry for myself that I ever had to go through that. I was already losing hope in Accutane and having this to deal with as well severely affected me mentally as I truly hated my skin and the way I looked.


  • Dryness 6/10
  • Back pain 6/10
  • Increased sun exposure 5/10
  • Purging 4/10

 

Months 7 – 8 (80 mg)

At this point I still wasn’t seeing consistent results so alongside my dermatologist we decided to up my dosage to 80 mg and to continue longer than the regular treatment. This meant coming back from university twice in the first semester to pick up my prescription at the hospital which really sucked, however I knew at this point I’d committed this far and I really wanted to get it finished. Consequently, the side effects were awful. My first week of university I had an incredibly dry nose for some reason and would get peeling and flaking around my mouth – not a great way to make friends. One time I forgot to take lip balm with me to a lecture and it was one of the most uncomfortable hours of my life. It was at this point that I was taking every single measure to keep my skin and lips moisturized and if I forgot any of it, I would suffer the consequences.

 

However, I finally did see a change in my skin and my acne began to clear up properly. By the last month I didn’t see any new spots, only healing ones. It wasn’t completely happy with coming off of Accutane because it had only been a short period of no new spots, but it wasn’t good for my body to stay on such a harsh drug for much longer, so I resigned myself to coming off.


  • Dryness 10/10
  • Back pain 8/10
  • Increased sun exposure 6/10
  • Purging 1/10

 

6 months post-Accutane

This is the best time honestly; makes the hard months you were on the drug slightly more worth it. I barely got spots in this time at all, and having the moisture slowly come back into your skin is the best feeling. The side effects fade very slowly: the back pain stopped, my lips were getting less dry and my skin didn’t feel so tight and thin.

 

Overall reflection: 1 ½ years post-Accutane (Now)

Writing this now has been pretty cathartic for me. Now, I’m very grateful I went through this whole experience and I know what I endured made me a stronger person. I may sound like I’m being very dramatic about it, but your self-esteem when you hate your appearance and your face is so incredibly low and it was very difficult to enjoy a lot of my life whilst I was on the drug. I almost never reflect on this experience as thinking about how much I struggled and how low I felt during this time makes me genuinely sad as I’m doing so much better now.

 

I terms of my skin; I get the odd breakout, but I can normally attribute it to something I’ve done that’s triggered it. It’s no longer dry and tight and has fully recovered from taking Accutane. I also don’t get any back pain and haven’t done for around a year now. The only side-effect I still struggle with is hypersensitivity to light – I have to wear sunglasses a lot otherwise I get headaches basically. But other than that everyone else has gone back to normal.

 

My Accutane skincare routine

Since your skin is so dry and sensitive from taking Accutane your skincare routine has to be so gentle and moisturizing to protect your moisture barrier. As recommended by most people, I used Cerave hydrating cleanser and moisturizer in the AM and PM, as well as Biore Watery Rich Essence sun cream in the AM and Garnier Micellar water to remove makeup. If my skin was very dry I used Clinique moisture surge or the Origins overnight moisturizer. I didn’t use any actives and I was incredibly gentle with my skin.

 

Tips

  • Use a humidifier overnight to increase the amount of moisture in the air
  • Take photos – it sucks at the time but I wish I had!
  • Put lip balm in every single bag, room and car you could possibly use
  • Keep your hair moisturized as well
  • Apply your skincare routine and then lather your face in Vaseline to sleep in
  • Put Vaseline around and inside your nose to prevent discomfort
  • Use eye drops

 

Alcohol and Accutane

In terms of drinking, you shouldn’t. Accutane puts a lot of strain on your liver and you don’t need to added bonus of alcohol on top of that as you could cause irreversible damage. I did drink – I went on a post A level holiday and went into my first year at university, so the drinking culture was very prevalent. I would recommend against it and I felt very guilty whenever I did, but I didn’t see any detrimental effects from it. That’s not to say you won’t.

 

If you’re going to drink alcohol – please drink a lot of water as well! I know everyone says this about drinking, but you want to protect your liver as much as possible in this time if you’re already straining it. Also, the hangovers on Accutane suck, so save yourself that pain. Just be responsible and look after yourself, the treatments are normally 6 months which isn’t too long to go T total.

 

Conclusion

Going onto Accutane during such a crucial time in my life was a very difficult experience for me and it had a lot of side effects which greatly affected me. If I could re do my life I would’ve tried to get on the drug at a much younger age to get it over with.

 

Overall I’m very glad I went through it. Most importantly, it did pretty much clear my skin and greatly improve my confidence because of that. Also as much as I don’t want to turn the difficult times in my life into some sort of learning experience unnecessarily, I do think that this experience contributed to who I am today. If I was still struggling with my skin as much as I was pre-Accutane I don’t think I would have the confidence to write this blog or even feel as if I’m on any sort of glow up journey.

 

If you’re thinking about going on Accutane please really think about how much it might affect you and if it’s going to be worth it. If you’re going through this stuff now, know that it does get better and you’re not alone. This is something that’s very personal to me and I know how much it can affect people, so if you want to talk to anyone please reach out on any of my social media accounts and I’d be happy to respond.

 

 

 


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