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Antidepressants

Antidepressants - Patient Information Leaflets

All medicines come with a patient information leaflet that gives details about the medicine including: what it is prescribed for, how to take it, possible side effects, and when not to take it. In our interviews people said they usually read the leaflet; often it was of limited use and they sought information from other places as well (see also ‘Finding out more information about antidepressant medicines’). Clare has taken antidepressants on and off for most of her life and feels that patient information sheets are more informative than in the past. 
 

Clare thinks that patient information leaflets have improved over recent years

Clare thinks that patient information leaflets have improved over recent years

Age at interview: 59
Sex: Female
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I’ve never had a course of tablets without reading the information leaflet in it which used to happen in the past.
 
Yes.
 
You know you would just get...
 
I was going to say do you take much notice of the information that’s in the box?
 
I you read it every time you which is… because I’ve read it now about 40 times because I’ve had, you know, I always get it out and oh yes no I haven’t had that and I haven’t had that. But what's a good thing about leaflets of course they don’t just give you the contraindications or the side effects, they go... less than one in a 100 will get this, you know, it’s actually quite, the definition’s quite good because it’s quite detailed and I’ve noticed it’s changed as well.
 
What changes have you noticed?
 
Well just I think kind of I can’t, see now I’ve said it I can’t think of one but I think it was more kind of one in a 100 will experience this and there was the graph thing that had kind of gone from one in a 1000 to one in a 100 or something. So obviously that’s the research that the drug company’s do into, you know, the more information they get from what people are reporting I would imagine.
It can be useful to read through the sheet before starting a new medicine. Reading the leaflet at home after collecting the prescription can help people feel more prepared about what to expect. They may use it to help them decide about starting to take a new medicine, to learn about possible side effects, or find out how the medicine interacts with other tablets they are taking, or with certain foods or alcohol. Reading the leaflet may also prompt people to ask the doctor for more information. Sonia (below) said the information sheet had told her things that she thought her doctor should have told her about. Not everyone wants to know a lot of details about their medicines. Steve commented - ‘I’m not a details kind of person I’m not focused on the drug I’m taking, I’m focused on how I’m feeling’. 
 

Sonia thought her doctor should have told her about some...

Sonia thought her doctor should have told her about some...

Age at interview: 31
Sex: Female
Age at diagnosis: 17
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What they didn’t tell me, and I found out by reading the kind of, you know, patient note information leaflets that you get, was that it makes you sugar crave in a really, really big way . So I didn’t get on very well with that drug because I had a history, well have a history of eating problems so giving a drug that makes you sugar crave to someone who has eating issues was probably not the best idea in the world.
 
I’ve read, you get your patient information leaflet and you do read ‘oh you shouldn’t mix it with these medications’ and certainly there have been some things that I’ve been on and I can’t remember which ones, that I’ve read them and I’ve thought well I’m also on that and that says I shouldn’t be on both at the same time and you kind of think well someone should be telling me that I shouldn’t be finding that out by myself but generally they don’t tell you anything.
People react differently and not everyone experiences side effects. The information leaflet contains a lot of information about possible side effects and some people find it worrying to read. As Catherine commented ‘there’s this long, long list of [side effects] you know, and they have to legally put that and you read and you think oh my God, [laughs] you know, what’s going to happen?’ Sometimes after reading the list of side effects people decide not to take the medicine. 
 

Melanie was worried about the side effects listed on the leaflet...

Melanie was worried about the side effects listed on the leaflet...

Age at interview: 44
Sex: Female
Age at diagnosis: 43
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I was a little bit worried because you know obviously I am fiercely independent and, you know, I have heard people have said when they’ve taken antidepressants that they go all fluffy and they don’t really know what they’re saying and what they’re doing and I didn’t really want to be like that and obviously with being on my own I didn’t want to put myself into any situations where, you know, I wasn’t in control of myself or I could fall over or I could injure myself because of the medication. So to be honest when I did get my first prescription I read the leaflet inside, front and back, to make sure I knew exactly what could happen to me in the course of taking them.
 
Did that reassure you, how did that, how did the information seem?
 
There were certain bits of it that I thought you know a lot of the symptoms were things that I, a lot of the side effects of the medication were things that I was already suffering with symptoms of the depression.
 
Which sort of things were they?
 
Well sickness and dizziness and palpitations and things like that.
 
What did you think then when you read that?
 
I was a little bit concerned that I didn’t want any of my symptoms to get worse but then the doctor explained that, you know, it would calm a lot of things down and to be honest that’s what has happened.
 

Rachel described the patient information leaflet as ‘frightening’...

Rachel described the patient information leaflet as ‘frightening’...

Age at interview: 51
Sex: Female
Age at diagnosis: 11
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I do ask as well because of the frightening leaflet, you know, I’ve had it where I’ve come home with something and then you read, you read the leaflet and then I haven’t taken them because it sounds so scary.
 
Right, what kind of things would it say that would scare you?
 
Well it seems to repeat the symptoms of what you’re suffering from already.......’you may feel suicidal’ or you think oh my God, you know.
 
It’s meant to stop me from feeling.....that?
 
Yes and I mean I again it’s something I try not do because, but I’m not always strong willed and I because I it’s almost like I, I sometimes think I kind of use it because then I can justify my lack of interest in taking it, ‘wow look at all these contraindications’
 
Can’t take that.
 
Yes so but pretend you know I’m quite good at, you know, stocking up my reasons why I can’t do.
 

Hannah read through the leaflet before she started taking...

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Hannah read through the leaflet before she started taking...

Age at interview: 28
Sex: Female
Age at diagnosis: 23
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I think initially, I know when I first started taking, when I first started taking antidepressants and I took the citalopram that I did read all the information, actually I probably did read all the information leaflets on all of them but I think the first time I thought ‘oh my God’ because there was so many different things it was almost like some of them it was almost like it negated taking them in the first place because I’m sure like some of them where it says like, you know, ‘can cause suicidal feelings’ that’s if you weren’t already feeling suicidal it’s just ‘well is it worth that risk?’ But I don’t think I was influenced on the whole, I’m not sure though.
 
Yes I was really worried to begin with but then as it went on, I mean as I took different ones to be honest I think I was feeling so bad that I just wanted anything to help.
It can be reassuring to have a list of potential side effects to refer to. When Sharon began having vivid dreams soon after starting taking a new antidepressant she used the leaflet to check if it could be an effect of the medicine. ‘It was on the leaflet so I wasn't too worried’. But Stephen said seeing the listed side effects could make you think you had them ‘Oh, have I got that... or will I get that one?’
 
Some people thought it would be more useful if the leaflet gave more information such as how effective the medicine was, and about how they could deal with side effects. 
 

Thomas thinks it would be more helpful if the leaflet...

Thomas thinks it would be more helpful if the leaflet...

Age at interview: 34
Sex: Male
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What kind of information would it have been helpful for you to have had right from the start?
 
Okay. What I had was literally just this tiny metal tube, the kind of information sheet inside of the box the medication came from the from the Boots chemist. And it just simply had a ‘side effects’ with a huge list, one huge long paragraph of short type. It wasn’t even very good for me because I’m partially sighted so I couldn’t, you know, read it properly. That’s all I had.
 
What I would want was a list with common, can happen, rarely, side effects, how to treat it, and with the treatment being prescribed along with the medication. That is what I would want.
 
So some idea that those side effects could be managed in some way?
 
Yes.
 
By whatever means.
 
But that’s not what I got. So you know, some way of treating the horrible taste I had in my mouth or some way of dealing with the feeling of always kind of wanting to be sick or just sweating, but they would never , they would, you know, it wasn’t like that. It was just a list of side effects. So that’s what I would have wanted.
 

Gerry said it can be easy to think

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Gerry said it can be easy to think

Age at interview: 31
Sex: Male
Age at diagnosis: 29
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I mean if you ever read the instructions that go with antidepressants it basically says ‘anything can happen to you’ and there’s a chance that it could be to do with antidepressants but, you know, just basically it like covers every possible scenario.
 
And how much do, I mean you said you read the leaflet when you take some tablets, what do you feel when you read it?
 
I feel like ‘dizzy oh yeah... I feel a bit dizzy or yes I have had a bit of a dodgy stomach’ so you know you just think every possible ailment, you know, that you could easily have without antidepressants, the only thing that I definitely, like I say is the sexual performance thing, that is definitely something that I can attribute.
 
Yes it’s a very physical symptom.
 
Yes, other than that, other than the first couple of weeks, you know, the only other ongoing symptom really is that. so yes, what was the question, did I answer it?
 
The instructions basically means that a lot of things can, they’ve done a lot of tests and possibly this could happen so, you know, it’s probably very difficult to give succinct accurate information about the effects of, or the side effects rather than the effects of antidepressants.
It can sometimes be difficult for people to decide whether to adhere to the advice given in the leaflet, for example about drinking alcohol. The guidance is that it’s safest to avoid drinking alcohol because some antidepressants can interact with it, but some people said they had ignored the advice because they wanted to continue to socialise with friends. While no-one we talked to had had a severe reaction to drinking alcohol while taking an antidepressant it’s quite common for the effects of alcohol to be exaggerated (see also ‘Antidepressants: telling family and friends’). 
 

The first time she took antidepressants Victoria avoided...

The first time she took antidepressants Victoria avoided...

Age at interview: 25
Sex: Female
Age at diagnosis: 20
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Yes it said it wasn’t recommended to drink with antidepressants and that’s kind of the idea that people get anyway I can’t now remember whether the GP, the initial GP several years ago actually told me that I shouldn’t drink. us certainly I didn’t and then when I went back on this time I thought ‘oh no I’m not going to be able to drink and that’s going to seem odd and then people will find out because they’ll want to know why I’m not drinking’. And I stuck it out for a few months and then I just happened to go to the GP about something else and I think they asked me how much I drank and I said well I don’t because I’m on citalopram and she said ‘What, who told you that?’ and I said ‘but it says in the little leaflet you’re not allowed to it’s a really bad,’ ‘It tells you in all the leaflets it doesn’t mean anyone takes any notice and I was like ‘Oh alright then fair enough.’
Collette had experienced severe side effects when she stopped taking her antidepressant. Although these were listed on the information sheet, her GP said he didn’t know about them because they were not listed in the medical guide used by doctors (British National Formulary). She made an official report of her side effects using the ‘yellow card’ scheme. This is the system that allows people to report a suspected adverse drug reaction (ADR) or a side effect from a medicine or vaccine. 
 

Collette explains how she reported side effects using the...

Collette explains how she reported side effects using the...

Age at interview: 28
Sex: Female
Age at diagnosis: 19
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I don't pay too much attention to those given my job anyway I tend to look up in the medical books to what they are and what the side effects are and what yellow cards are on them.
 
It’s the side effects that they don’t tell you about, the leaflets are usually quite good in fact the leaflets sometimes have things on them that the books the doctors look at don’t which is something me and my GP have kind of discussed with the duloxetine because there was like one side effect listed on there is not what is listed in the book.
 
What did the doctor say about that?
 
Well it’s not reported or something some, it’s on the leaflet comes with the drug.
 
You mentioned yellow card what, tell me what you know about that.
 
The yellow card scheme is where patients can report side effects whether they’re listed or not they can report them and say that they’ve taken that medication and that they’ve, it’s had this effect on them and it means they can keep a tab on what side effects are going on and so how likely you are to get that side effect.


Last reviewed June 2016.
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