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Acne (young people)

Isotretinoin (e.g. Roaccutane) side effects and risks

There are a number of side effects and risks associated with isotretinoin (e.g. Roaccutane, Accutane) tablets. Often these side effects are banded into ‘mild’, ‘moderate’ and ‘severe’. Most people we talked to had experienced side effects considered ‘mild’ or ‘moderate’, but these could still have a big impact on the person’s life.
 

Dr McPherson discusses the benefits and risks of isotretinoin treatments.

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And it's for the most part a very well tolerated, very effective drug. And actually the benefits for most people far outweigh any risks. Most people on the treatment will get dry skin. And that's partly the way it works by, you know, making your skin less oily, less productive of sebum. And that's why it helps the acne. So, dry skin is almost to be expected. The other risk which happens in a lot of people is they can get a flare up of their acne when they first start using it. So it's maybe prudent to start on a low dose and kind of build-up gradually, so you don't get that flare up of your acne, which can be very disheartening. Also makes you more sensitive to the sun. So you have to be quite careful if you're, you know, sun-exposed or you've got fair skin. The other risks are really unusual. I mean, the main thing for females is they mustn't get pregnant. Because it does, you know, we know that it has a very- it's very something called teratogenic. So it's very likely to cause a problem with the fetus if you did get pregnant. And that's why it's important for them to be contraception or discuss the risks of pregnancy when they get prescribed this medication. But the other risks are really quite unusual. So we do monitor blood tests to look at liver function and the fat levels in people's bloods. But normally in young people, you know, these are unproblematic and it's very unusual to have problems with those. And it can occasionally cause muscle aches and pains. The thing which it's always been associated with and people are concerned about is mood and depression and even suicide risk. If that is associated, which it's not clear it is, it seems to be a very esoteric, individual, you know, thing that happens. Most people I see who start isotretinoin, their mood improves because their skin improves. And that's by far the most common psychological side effect, is that people feel better because their skin is better. But it does, you know, it takes a few weeks for things to settle down. And often the beginning it can be a bit, you know, they have to sort of wait for their skin to kind of get used to it, in a way. Whether it really causes severe depression and suicide is still unclear. And as I said, if it does, it's very much a kind of idiosyncratic reaction, which is not- you can't predict. So even if someone has had depression or even suicidal ideation, you can't- it's not a reason not to give them isotretinoin if their skin warrants it. And you wouldn't be able to predict if they were the sort of person that might have mood problems with it. Certainly if you look at big groups of people on and off this medicine, it's not- it's not clearly associated. And it's something which again, will be considered by any doctor, but mostly the benefits will outweigh the risks.
Side effects included:

•    dry skin and lips – this was mentioned by everyone we talked to. 

Will said his skin “dried up to like a prune” especially in the corners of the mouth. Devan’s nostrils felt very dry. Some found their skin became thinner and more fragile. Many used moisturisers and lip balms to help. Hester’s throat and eyes were also drier than usual so she kept hydrated by drinking water and using eye drops. A few people noticed their scalp/hair became less oily too – Shu En saw this as a good thing.
 

Naomi talks about dry skin as a side effect.

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Age at interview: 22
Sex: Female
Age at diagnosis: 9
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Every time I had it I started on a lower dose, I think you start with like half the quantity and then after like a month or two you move up to the full dose. and so I think that kind of like eased it in without like too many side effects straight away but like, yeah just like horribly dry skin [laughs] and like your lips just peeling all over the place [laughs]. and, I mean I don’t, I mean they do say that like it can affect your mood, but I mean I think I was quite upset about the whole process anyway so I don’t think it was necessarily the pills that were making it worse. But yeah I mean I guess I didn't have any of the really, really awful side effects that you read about on the packet which are quite daunting, you know, you read it and it's like, “Oh I could get jaundice,” or whatever but . Yeah I mean I guess it wasn’t that bad but it’s just like, you know, it does make your skin worse before it gets better and that’s, that’s always quite hard to go through and yeah but you just have to use tons of moisturiser and loads of Vaseline [laughs] and then, and then it improves, but yeah.
 
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Harriet was told not to wax her legs whilst taking isotretinoin because the skin would be thinner and drier.

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Age at interview: 21
Sex: Female
Age at diagnosis: 12
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Could I ask a bit about side effects of any of the treatments that you’ve tried?

Oh, yeah. It, it’s most, mostly they all just tend to dry out your skin a lot. I know when I went on the Roaccutane (isotretinoin) he said, “Don’t wax your legs. Because if you wax your legs then because your skin gets so thin it will just like rip your skin off and you’ll bleed.” So I was like, “Oh, okay, I won’t” yeah. And it’s, dry skin is something I still, I didn’t, I never got it before but it’s something I still get now. And I think it’s probably a result of that. Roaccutane as well gives you really just like completely random periods. I had, it was about, it just, for sort of a few months there was just absolutely nothing. But, yeah. But the, the ones, sort of the external creams and things, they didn’t really have any major, major side effects.

So with the dry skin that sort of carried on since you took Roaccutane, how do you sort of deal with that on a day-to-day basis?

I just, you just moisturise I guess. Like I, it’s not too much of an issue with sort of arms and legs cos it’s, you just use like regular moisturiser once a day.
•    sensitivity to sunlight and getting sunburnt more easily.

Ollie found he needed more sun cream, though he thought it looked better when he tanned as this made the redness of the acne stand out less. Others, like Abbie, had bad experiences with sunburn which made their acne more painful and visible.

•    overheating and increased sweating
 
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A side effect of isotretinoin for Devan is sweating more. His dermatologist made suggestions to stop others noticing.

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Age at interview: 18
Sex: Male
Age at diagnosis: 13
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See, recently with the isotretinoin I’ve noticed that I’ve been, my temperature, well, my temperature’s normal but I feel a lot warmer and I start sweating a lot more as well. So that’s one of the things that the doctor was looking at. Of, by, looking at how I can sort of control the sweating, because otherwise, that is one thing that people notice, is the, that they see you sweating and you sort of start thinking, “Oh, people are going to see it”, and it makes you sweat more or something.

So, obviously that, that’s one of the biggest side effects. Another side effect was, it was like headaches and toothache as well. I had a lot of bleeding gums, my gums were bleeding quite a bit while I were on the steroids for the isotretinoin and, again, that was another side effect, so I’ve sort of had quite a few of the side effects that are listed that you’re expected to get as well. 

Well, when, it was sort of recently with the sweating that the doc-, the GP, she sort of says to me, it might be worth wearing tee-shirts with, or hoodies, that have got a hood on that you can sort of hide that sweating with. And so that it just sort of, say if you were sort of sweating on your forehead – you could just sort of use the arm and wipe the sweat off like that, so that nobody would sort of notice it that much. And, but with sort of, when I were in secondary school it was sort of my school uniform was a black hoodie, a black tee-shirt anyway, so you could sort of easily keep that on rather than take it off.
•    aching muscles and joints – some people found they had to stop taking part in sports and other hobbies for a while. Devan also had headaches and toothache, and found his gums would sometimes bleed.
 

Abbie found isotretinoin made her achy and tired, meaning she had to stop her part-time job as a gymnastics coach for a while.

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Age at interview: 17
Sex: Female
Age at diagnosis: 13
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Yeah, so I do, for my job I’m a gymnastics coach. So, which is a bit strange. But basically one of the side effects is you get muscle fatigue and like joint pain. And I started my job and A-, Roaccutane (isotretinoin) around the time I went back to school. So there was a, like in September, so there was like a lot of stuff going on. So I was really tired in a lot of the times. And also it affected the, my shoulder joint quite a lot. And probably for my job, it didn’t help but it got really sore. And the dry skin. So you get really dry like, mostly it was your lips. So I used to always get like, not cold sores, but it used to crack in the corner of my, my lips. So that used to be quite painful. And it was mostly just fatigue and then the dry skin. But luckily I didn’t get any of the, some people like got nausea and stuff like that. I didn’t get any of that.

How did you deal with the side effects that you had?

Well, I knew that, well, I, I thought it would get better like after a while. Cos I knew that I was taking this and I knew the side effects. So I thought if my skin would get better then I could deal with it at first. And just kind of ploughed through I guess [laugh]. And, yeah, and I kept looking at the, the blogs that I’d found online to see that they’d gone through the whole side effects as well and they’d gone through it. So I thought ‘oh, I can do it too.’
•    irregular menstrual periods
 
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Harriet had expected side effects with isotretinoin, like disrupted menstrual periods.

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Age at interview: 21
Sex: Female
Age at diagnosis: 12
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And with the side effects of sort of irregular periods and so on --

Yeah.

-- could you tell me a bit about how you felt about that and how you dealt with it? Was it a concern ever for you?

It wasn’t particularly a concern. I just sort of assumed, it kind of puts your whole body in a bit of chaos. So you just get, get this really dry skin and it can sometimes give you other side effects like just feeling quite down. So I remember getting a bit down for, like at various points and you just like, for, actually for no reason. And then you sort of think, you know, “No, this isn’t me. It’s just cos I’m on some like crazy medication” yeah. But you just sort of get used to it and learn to work with it and, yeah.

Were those side effects that your dermatologist or your GP, mostly your dermatologist for Roaccutane (isotretinoin), wasn’t it?

Yeah.

Were those things that the dermatologist had told you about before, to expect?

Yeah, I think he went through, sort of went down the list of all the things that were likely and not very likely and everything in between, yeah. So I, I sort of knew what to expect. And with, yeah, with the irregular periods it’s, you, I wasn’t really surprised because sort of everything else was just a bit weird. So it seemed like the natural progression, yeah.
•    queasiness (feeling sick)

•    feeling tired and weary, having less energy

•    mood swings, feeling low and depression (see also emotions

This was something that most people who took isotretinoin were aware of and a key reason not to try it for others. Others were sceptical about whether it was true and some saw it as “scaremongering”. Emma had heard isotretinoin could cause depression but says it wasn’t “enough of a worry to stop me from going on the medication”. Most didn’t think they had a negative emotional side effect from the treatment, but a few said they had. Taking isotretinoin caused Will to feel down and less confident, affecting him more than his acne had in the first place. He stopped playing badminton and says listening to music became a “support network” when he was low. Some said that exam stress could add to mood swings.
 
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Will talks about the emotional side effects he had whilst taking isotretinoin.

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Age at interview: 21
Sex: Male
Age at diagnosis: 14
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I don’t know how to describe it. It was almost as if I had like a blanket over my head, so like everything was kind of a bit muffled, like everything seemed quite dark. I don’t know, all my kind of senses were subdued almost. It was like as if all the kind of [laughs] it sounds really over-dramatic, but [laughs] kind of like all the joy had been sucked out of my life in the sense of like, I don’t know, everything seemed less exciting, I don’t know it seemed less, I don’t know, yeah, I couldn’t get really excited about much stuff and I stopped playing sport. I used to play like badminton for like [county name], like county badminton. I used to play a lot, I just couldn’t be bothered. 

It was just nothing really kind of [laughs] excited me. 
 
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Nina hasn’t tried isotretinoin because of links with depression.

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Age at interview: 20
Sex: Female
Age at diagnosis: 12
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But I think it was probably about that time that a lot of, you know, there was that study that came out that was associating it with an increased risk of suicidality in young people and because my mum at the time was aware that I’ve got quite a strong family history of mental health problems she did not want me taking it and it’s just as well because like shortly after that I like sort of realised myself and ended up getting also treatment for mental health problems including depression which it turns I’d probably been depressed for a while and I would say that like obviously it’s ‘referring to skin, not saying depression is a small factor!’ a small factor, that people get depressed, you know, for all sorts or reasons and on their own but like I definitely think that my skin didn’t help and I think that’s probably true for a lot of my friends that had, you know, problems with their mood because you feel really bad about how you look. and, so I mean it’s probably, you know, just as well, and so after that trying to, after, you know, you get diagnosed with that it’s pretty difficult to get anyone to prescribe Roaccutane and also the pill again because, you know, mood tends to fluctuate with the pill. yeah so I guess both of those I was offered by multiple people but, you know, I, you know the pill when I was too young to be like ‘What, no I’d be really embarrassed none of my friends are taking this’ and Roaccutane I guess yeah my mum didn’t want me doing that and I can understand, I was annoyed at the time and then I understood, you know, shortly afterwards it was just as well.
 

Rachael thinks it’s difficult to work out why she felt upset at times whilst taking isotretinoin.

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Age at interview: 18
Sex: Female
Age at diagnosis: 16
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So, it's hard to like just like tell whether it is the Roaccutane (isotretinoin) or whether it's what's going on, cos I was quite stressed cos I was doing my A-levels. So, I did like cry a few times when I didn’t really know why I was crying and it was just at home; like I was fine at school like and everything. And like, I think my Mum like pointed out to me like, you know, "This isn't normal, you are not coping, you are being more upset than…" cos I'm quite like a positive person I think. But yeah, that was quite hard but yeah it's hard to tell like whether it's you or whether it's the situation or the drug. So, I wouldn’t want to like tell other people not to go on it or, encourage them to go on it cos I think everyone deals with it differently. But I think it did definitely affect my emotions or made it harder to deal with things and then, with the A-levels, that was like a combination and just made things a bit difficult yeh.

Yeah. Were there any other sort of aspects, like stresses or triggers for you that you knew kind of made it harder, either physically with your skin, or emotionally to sort of cope with it?

I think it is annoying physically as well because you do still have the spots while you're on it. So, that make, like obviously it affects things. But, I don’t know, I think it's sort of, yeah the triggers I guess would be like academic stresses or like, if you're having like, you know a sort of family argument or, any like friendship problems, I feel like that becomes more of a trigger than it would have been. So, I think that it is triggers but I think you just lose your ability to cope with them as well and yeh.

So, you lose your ability to cope from them because of the emotional…?

Yeah I think you just lose the ability to see that it's not a big deal and you just, I think you just become more dramatic about it I think yeah.
Other risks associated with isotretinoin, but which no one talked about experiencing, were:

•    liver damage – lots of people hinted at this when talking about limits on drinking alcohol. 

This is because isotretinoin can affect the liver, an organ which is put under extra stress with processing alcohol. Before taking isotretinoin, everyone had a blood test to check their liver function. Some people had a couple of tests if the results came back unclear. Dermatologists had often told the person to avoid drinking alcohol or given them guidelines on how many units would be okay. This could be a particular concern for those at university where drinking alcohol was often seen as part of the social life “culture” and could shape the decision about taking isotretinoin. Despite their concerns, some drank small amounts of alcohol occasionally and found this to be okay for them.
 

Rachael gradually eased into drinking some alcohol socially.

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Age at interview: 18
Sex: Female
Age at diagnosis: 16
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But with alcohol, I guess the main thing to say is like, on Roaccutane (isotretinoin) I couldn’t drink for a while which is a bit annoying especially like when you're eighteen and you sort of wanna have fun with your friends. But I didn’t let it stop me – like I'd go out and not drink or I'd… or I would like still drink a bit and I think, yeah you don’t have to let it stop you doing it.

How did you sort of assess how much it would be OK to drink?

Well, at the beginning I drank nothing, I literally had, maybe the most I'd have was like a sip or something. I went out quite a few times and just drank nothing. Even like going clubbing I would not drink anything just because I felt, at first it was, I was just like a bit afraid I guess. Like, cos it's really drummed into you shouldn’t drink on it because it's affecting your liver and then you don’t want to add more like stress on your liver. But after I'd been on it for ages it just sort of… it feels like you’ve got over the side-effects maybe and I just felt like I could drink and I felt like that, because there was less of an ache maybe that I felt more comfortable so.
 

Hester sometimes found it easier to tell people she couldn’t drink any alcohol at all, rather than explain in more detail.

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Age at interview: 21
Sex: Female
Age at diagnosis: 15
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Because the alcohol was the only thing that really interfered with it. Although, you know, I had to be careful about drinking a lot more fluids because my throat was very dry. And it meant that if I went out, I had to take eye drops with me and like I used to make sure that I didn't wear too much like eye make-up that was going to get smudged because I, just because obviously I was staying up-, I kept my contacts in longer, I would need to like go to the toilets and like put eye drops in. Just because they'd start to get dry by ten, 11 at night. I think alcohol was, it was a bit difficult because I was still in fresher’s. Or my first year at uni. But luckily, my friends were quite cool about it, and going out and getting really, really drunk was not something that I had to do to enjoy myself with my friends and on socials. It was, it was awkward at times because especially with kind of socials where, you know, it was like drinking games and things like that. And having to be like, “I can have one glass but I can't have more.” It’s sometimes, it sometimes meant I had to sort of say that I'm not going to drink anything because it's simpler for people to understand than, “I can't drink more than one unit a week” [laughs]. I didn't always like keep to the exact guidelines, but I, yeah. I spoke to my dermatologist about that, and was quite honest with him and be like, “Look, I had like this many units last week, do you think that's okay?” And he was good about it and said, “Yeah, no actually it's not that bad, it's just we'd like you to keep it down, you know, keep it as low as possible.” It saved me a lot of money, [laughs] in my first year, so there were some positive side effects. But yeah, I think it was, it was frustrating, I think. A few of my friends were like, “Awr, are you sure you don't want to kind of delay the treatment?” But it was more important to me to have my acne sorted out than it was to drink a lot. And I didn't mind, didn't mind it in the long term because I knew that it was going to have, yeah, like a positive effect. And I would have chosen to be sober, and to have my acne sorted like any time. So I didn't mind that, I just- it just meant that I'm kind of glad that I'd researched it quite a lot and I knew what I was going for, and I was quite sure that I wanted it because I think it's quite a, a big ask. You know, it sounds silly to say it's a big ask to not drink, but I think you are in your first year in uni and there's a lot of social things on. It is something that you have to be quite sure that you want to not drink.
•    birth defects – it is known that isotretinoin causes fetal anomalies (birth defects) to women who become/are pregnant whilst taking the treatment. 

A lot of the young women had to have monthly pregnancy tests to be sure they weren’t pregnant. There’s no evidence that isotretinoin poses this risk in sperm, though Chris thought there might be and his doctor encouraged him to have protected sex with condoms (see also Young People & Sexual Health).
 

Shu En talks about the link between isotretinoin and birth defects.

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Age at interview: 19
Sex: Female
Age at diagnosis: 9
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For Roaccutane (isotretinoin), I think it was something like in the US they are very careful about administering it, because if you take Roaccutane and you get pregnant the fetus will be deformed because Roaccutane mimics the structure of vitamin A. So it prevents-, yeah. So it’s not, it’s not even like a risk, like it’s 100% the fetus would be deformed. So that was, that was something, that was a consideration, I think for people who’re in my age group, I suppose. But I was much younger then. But like now it would be a consideration, yeah.

So how old would you have been when you were on Roaccutane?

Like 16. Yeah.

And did your doctor talk to you about those risks?

Yeah. 
Some people’s dermatologists asked them about side effects at each appointment. Abbie’s dermatologist encouraged her to say if ever she felt depressed or had suicidal thoughts whilst taking isotretinoin. After finishing treatment which worked well, most people looked back on the side effects they had as acceptable things to put up with for the ‘reward’ of clearer skin.
 
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Will knew he could stop isotretinoin because of side effects, but kept taking it partly out of habit.

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Age at interview: 21
Sex: Male
Age at diagnosis: 14
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I think what the dermatologist kind of emphasised was, you know, if things weren’t going particularly well, you know, you could kind of stop it, I think that’s mainly what I remember in terms of support. But as to, you know, you know, a support program or a support network – I don’t really remember much about that. 

Yeah. 

Did you ever consider stopping Roaccutane (isotretinoin) with the side effects that you had? 

[Laughs] No. I, well, yes. Yes, I did. But I think ultimately I’m pleased that I stuck with it, I think definitely. But there was never a time where I was like “OK, you know, I should probably stop this” kind of thing. It’s weird because as I say, like taking it becomes so kind of habitual and so normalised – you’re almost not aware of it itself. It kind of becomes a part of you, it becomes kind of, yeah it’s not something that you’re adding to your body – it kind of just becomes a part of kind of who you are for that sort of duration of time. So I don’t ever remember kind of really being conscious of Roaccutane coming like I’m, you know, ingesting, I’m taking it in. It was kind of that’s it was like a routine. It’s like a habit. 

And it wasn’t something that I considered like ‘yeah, I can stop it’. It almost became so normalised that I was like this is just, this is just how it is kind of thing. 

So, you know, waking up and taking like a paracetamol like if you’re like, you know, you know, this is rubbish example so I’m going to stop that. But yeah, it just became like a really habitual, really normalised so I didn’t think, yeah, I can, I didn’t think I could stop it almost. 

Hm. OK.

I think that was, that’s the main point. I didn’t think that I could stop it even though I definitely could have stopped it. 

So it was almost as if I needed someone to kind of remind me that it wasn’t necessary and I didn’t need to carry on doing it. 

Yeah. 

Like a course of antibiotics where you have to kind of see it through otherwise, you know, blah de blah. I kind of maybe could have benefited from someone telling me, “You can stop this, if you want to”. 
A few people thought the more ‘severe’ side effects and risks associated with isotretinoin were overstated. Molly thinks the impact on liver function and depression are emphasised on ‘official’ websites whereas most forum users talked about dry skin and muscle aches.
 
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Although he himself developed depression whilst on isotretinoin, Will thinks the risks of the treatment should be balanced with the likelihood of it happening.

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Age at interview: 21
Sex: Male
Age at diagnosis: 14
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I think there’s a lot of big scary talk in terms of, well from what I remember, I remember being quite terrified of the consequences [laughs] like I thought that, you know, I would commit suicide or my liver would just pack up or whatever. I think there’s a lot of quite severe talk when they describe the side effects, you know, at the end of the day everything has side effects, you know, from paracetamol, whatever. And, you know, they can be, you know, fatal, the side effects of paracetamol, you know, whatever, but I think in a way sometimes they ramp up the fear factor. 

Maybe a little bit too much possibly and I think actually the more, the less severe sort of side effects in a way are more, should be more important to, to be discussed maybe. [Talking in background] So these, these more, these, yeah, like the emotional sort of feelings, the sort of dried up skin, all this kind of stuff I feel is less severe, but actually I feel like it’s got more, it’s got the capacity to affects more people than these, these kind of big scary events. So actually a focus more on these sort of side effects are actually more important than kind of the big scary talk of, you know, people committing suicide and whatnot I think that’s maybe less important in many ways.

Because actually that, you know, those cases are in the minority I think. I’d imagine it’s safe to say like I think, you know, every drug comes with its risk and, you know, it is a, it is, yeah it can be, it can be dangerous, but I think actually being made aware of these more sort of subtle or these more widespread issues I think is more important probably for health care professionals. But I think yeah, I think they’re quite right in giving you, you gotta give the patients’ the facts and stuff, you know, that is important. But sometimes yeah this big scary talk is, I think it put a lot of people off it. I think I was very lucky in the sense that my mum was quite a, she was quite reasonable, she was quite balanced, you know, in her, sort of understanding of like, you know, medicine and whatnot, so she, you know, read up on a lot of journals about, you know, the sort of pros and cons and stuff, but I think if people didn’t have that access to that sort of knowledge I think a lot of people would be like there’s no way I’m touching that. There’s absolutely no way I’m doing that. 

So I think it’s important to, yeah. To make people aware that yes, you know, there are these, these big, big sort of risks, but actually, you know, these are in the minority of cases and actually you will, you will go through, you may go through some kind of difficult times, but ultimately they’re not that, for me, maybe I was lucky, that it wasn’t that bad kind of thing, you know, obviously it wasn’t fantastic, but it wasn’t that bad.
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