I have had acne for the better part of 7 years now. Started off as just a few spots, then the pores on my face started to widen, giving me black heads, and as if that wasn’t bad enough, I started to get cystic acne. I am honestly not sure why this started. Stress? Hormonal imbalance? Genetics? Who actually knows?
I have been to the doctor on and off now for the last 5 years. I have been put on the pill, antibiotics, and topical creams. I found the pill worked a bit, but they had to take me off it as it increases your chances of a stroke (quite significantly) and there is history of it in my family (Mum is on stroke 3 and my Gran died from a stroke). The antibiotics I took did help a bit, but being on antibiotics is just not good long term. As soon as I stopped them, my acne would flare up again with a passion. Topical creams are good at stopping a spot in its tracks, but you are then left with red, flaking, sore patches, so I am not really sure what is worse to look at!
For about a year I had been making my own facial soaps, cleansers, masks, face oils etc all in a bit to kill it naturally. Every time I found something that worked, my face would hit back at me tenfold. It was like the acne found a way to fight back.
Last year I was just totally fed up. I was sick to death of standing in front of the mirror every day, trying to conceal and paint my face to feel like I could leave the house with confidence. I tried my G.P once again, and this time, because of the scarring I have, I was referred to dermatology. It was a 6 month wait, that felt like it took forever. In my initial appointment, I was checked over, medical history discussed, and it was decided the best way forward was Roaccutane aka Isotronin. Due to my history of mental health, I was told to take a couple of weeks to think about it, and to read the 6 page, A4 booklet of possible side effects and warnings.
I was shaking as I left the office, just at the thought of this medication. When I got to the car, I phoned my husband sobbing. I was a mess. Just at the thought of it. By the time I got to work, I was completely spaced out. Hello depersonalisation. I found it so hard to concentrate that day, I just had the side effects whirling around in my head. Thinking things like “It would be just my luck to take this and drop down dead”, “Depression, anxiety & suicidal thoughts. Yes, because I need help there”, or “Potential balding, sudden loss of vision and seeping nails? Yup, that would be me. I bet ya!”.
That night I got home and I read umpteen forums online, most of which were on acne.org. The amount of horror stories out there is crazy! You would have people posting things like:
“OMG don’t do it! It was the worst thing I ever did. I ended up with Crohn’s disease and my hair fell out”
“Don’t do it, people have committed suicide because of this”
“My twin and I took this, I’m fine, but they’ve been left with so many health complications”
Reading these sent my thoughts into overdrive. I was beside myself. What was I going to do? I have exhausted everything. My acne is depressing the life out of me, literally! Here I am, faced with a horrific solution that could either cure or kill me. Is it worth it?
During the 2 week cooling off period, I was up and down like a rollercoaster. Some days I would look in the mirror and be all “I look horrific, I don’t care about the side effects, I’m doing this”, and others were “You know what, I may be ugly and spotty, but it’s better than dead!”. By the time my next appointment came around, I was so nervous. I sat shaking in the waiting room. My mouth was dryer than Ghandi’s sandal. When I was called into the room, I felt myself about to bubble. I knew I had no time left and I just had to make the decision. I talked with my dermatologist about all of my concerns, and he took the time to really listen to me. I was assured, that out of the hundreds of patients he’s seen, and put on Roaccutane, only 2 have come off the treatment, and that was their own choice, due to side effects. He then went on to tell me that he’s even treated someone with schizophrenia, and they had no issues at all. He did tell me that he wouldn’t offer me something, if he didn’t think it was safe to do so, and if he didn’t believe it would work, however, it was completely my choice and we could revisit the possibility of more antibiotics.
I took a moment to think, and I came to realise that I could at least try it. If I don’t like how it’s making me feel I can come off it. He’s already told me this, more than once in fact. What if I walked out of the room, with more antibiotics, finding myself in the same situation a few months later, regretting having not tried? And with that thought, I told him I would take the prescription. I was given a prescription for 20mg, of which is the lowest dose you can be put on to see results. It is also the dose that has shown to give the least side effects. Usually people are put onto 60mg for 4 months, but these are the people who suffer the worst. On the 20mg dose, you take it for up to 10 months, but I don’t mind, assuming it clears my acne and gives me the least side effects.
As I took my prescription to the hospital pharmacy, I was still shaking. I did even debate as I waited for it, just leaving without it and not looking back. As I walked back to the car, I thought about going back to talk with my dermatologist again, to discuss (again) my alternatives. I was driving myself crazy. When I got back to work, I was completely detached. I felt awful, dizzy, sickly. I let all of the negative thoughts surround me like a blanket of doom. I convinced myself that I was going to die that night. That was it. This would be my last day. Dramatic? Fuck yeah!! But, this is how my brain works. I’m sure some of you reading this will get it.
When I got home, I knew I had to take it, as they are best taken at night, with food. I stood making dinner, reading the booklet of warnings once again, and reading all the forums again. I was looking at all the arguments for and against it, trying to be objective. All the while the dark voice in my head was telling me “You know you’re unlucky. You know all the bad things you’re reading about will happen to you. You will die!”. It’s at this moment my Dad walks into the kitchen, looks at the booklet briefly and goes on to plead a case as to why he doesn’t want me to take it. I barked at him. I didn’t need him telling me the concerns. I had read them. I had thought about them for 2 weeks. Constantly. It had quite literally taken over my entire life, affected my sleep, work, mood, etc. It had consumed me. So, hearing my Dad make a negative case, just caused me to take it all out on him. Not my finest hour, and I have since apologised.
I stood in the kitchen, bubbling, again. Trying to read some positive comments, with a glass of water poured and my tablet in my other hand. The level of fear I felt was unreal. I’ve not felt that scared to do something for many years. If I was to liken it to anything; it was a similar level of fear I felt about leaving the house when I was agoraphobic. I put the pill back in the box, and then I thought, “You will regret not even trying”, so I quickly grabbed it back out of the box, and swallowed it without a second thought. I had done it. That was it. No going back now. I started to sob again. What had I done?
My daughter was staying home that night, so I had asked if she would sit with me and watch a movie for a bit. I was too scared to be alone in case something really bad happened. Thankfully, my daughter knew this, and was happy to sit with me and make jokes to help lighten the mood. I was also messaging my sister, who, as always, managed to put things into perspective for me. Before I knew it, the movie was over. I was still alive. I hadn’t gone blind. There was no headache, Abdominal pain, breathlessness, sickness, stomach upset etc. I was absolutely fine.
The other day I was speaking quite openly with a friend about my being worried when I started Roaccutane, and someone else I know approached me and was all “Don’t do it! I’ve been refused it from dermatologists because it’s so bad for you”… essentially putting the absolute fear in me. The whole while they’re offering me this advice, my inner voice is screaming for them to just shut up! Go away!! Take your concern and direct it elsewhere, this lady right here doesn’t need any more fear instilled… I tried to politely explain to this person that more than a little thought had gone into this decision. It wasn’t on a whim. I’ve not bypassed all the good doctors and been given a shit one that wants to kill me. Yet they continued to offer ‘advice’. This sent my anxiety into overdrive once again. I sat at my desk, in bits, frantically messaging my sister and husband, who both managed to peel me off the ceiling. I know that this person didn’t mean to scare me. Their concern came from a good place, and they are a really lovely person. I just wish people wouldn’t offer medical advice so freely, especially when negative and not asked for.
Today I’m exactly 8 days from taking 20mg of Roaccutane nightly with my dinner. Other than dry skin, throat, & some tightness around the forehead and cheeks, there is absolutely no side effects for me. I do appreciate that it needs to build up in my system, and my side effects may worsen, but for now? I’m all good. I have used my PMA every day to get me through being able to take my next tablet. Every day I recognise that this doctor has been practicing for a number of years, has successfully treated hundreds of happy/healthy patients, and I am but the next on his list. I also take the time to look in the mirror and marvel at how quickly my acne is starting to clear up. I had about 4 cystic lumps on my jawline just as I started treatment. They hadn’t quite surfaced yet, but they were sore, and you could feel them just waiting to appear. These have now gone. Completely. No red marks left behind. Just gone.
To anyone reading this, with anxiety issues, looking to start Roaccutane, I would say this to you:
There will always be scaremongers out there! Always. People love nothing more than to post doom and gloom. Someone on the acne.org site quite rightly pointed out, that people who have positive outcomes, tend to not need acne.org anymore, therefore their success stories are not there. People who have bad experiences however, need a platform to shout from, and that just so happens to be where we are finding our information.
It is not something to consider lightly. It is serious medication. My advice is this; read the leaflets you are given, talk in length with your dermatologist. Be prepared! You know that dry skin, throat, eyes, and peeling lips etc affect more than 1 in10 people, so keep your fluids up, buy eye drops, and invest in a good moisturiser and lip balm. Start from the moment you take your tablet to prevent, not treat, the side effects. Someone else said they started supplements like Vitamin D & Vitamin B6, and they found it helped. I discussed that with my dermatologist and his simple answer was “there is no evidence to support that supplements will help you when taking Roaccutane, but it cannot hurt if you want to”. So really, it may not help, but it won’t do you any harm.
As with all medication, possible side effects need to be listed. Take a moment to read a paracetamol packet for instance? They have a little list too. It’s not to say you’ll get any of them, they are just precautionary.
Do your own research, but take your findings to your G.P/Dermatologist, who can discuss them with you. Also, remember that you will have bloods taken at the start of treatment, and then again every 30 days.. This medication is not given out on a whim, and you are closely monitored. Just be sure that you’re informed from all the right sources, and try not to trust everything you read on forums. As whilst you can be sure some of the horror stories are true, don’t forget that the internet is full of trolls, and I don’t doubt for a second that some of those responses are just that. People trolling others, because why? Well they can, and unfortunately, there are some weird creatures out there that get off on it. We also need to consider, that whilst some people get terrible side effects, they may have underlying, or even existing, medical conditions that are affected by Roaccutane. We just don’t know. So don’t focus too much on others, focus on your medical history, how you feel, and what your doctors suggest for YOU.
I will look to do another post on this, at the end of my 30 days. I’ll give a full update on my moods, side effects (if any more appear), my skin and my anxiety.
I do hope that this helps you make your decision, whichever one is right for you!