Some of the people we talked to discussed drinking alcohol, smoking and taking illegal drugs. Here they share their experiences of the impact that taking these substances had on arthritis or their treatment.
People who drink, smoke or take illegal drugs should speak to their doctors about how such things impact on their health.
Some medications are known to interact with alcohol and can cause problems. For example, drinking excessive alcohol whilst on methotrexate can cause liver damage. You should always seek advice from your doctor about drinking alcohol whilst on any medication.
The age that people started drinking varied from person to person. Some said they were too young to drink and had never tasted a drop, whilst others started drinking as young teenagers. Sometimes people started drinking when they were 18 years or older. A few said that they drunk less as they got older. Some drank the odd glass of wine or bottle of beer on special occasions but others drank without watching their limits.
Emma is a full time PhD student in the dermatological sciences. She is white British.
I like my gin OK and I'm not, shouldn't be so pleased to like gin. No I don't know, some consultants I've spoken to are very stiff and very much, 'don’t drink, don't do this, don't do that, yeah. If you can try and cut out caffeine,' all this kind of stuff, you know, 'Try and realise everything,' and there's other people who are like, 'Well actually you be sensible and actually if you just stick to government guide lines,' and because I've never been on the maximum amount of methotrexate anyway, I've, you know, I'd have to be drinking an awful lot to cause irrefutable damage. So I try not to drink too much and like to be honest I mean, I say I drink but for me saying I drink, it's a couple of nights in a pub a week where I'll have a couple of pints and then I'll tend to go to the diet coke. OK admittedly, first year I was a Fresher, I got off my face, you know, four times a week you know, but because I was so disinclined to tell people about how much I've had, you know, problems with my arthritis and people just stare at you when you tell them and they look at you blankly like, 'Why would you take these drugs then?' you know, I just kind of got on with it and maybe I, maybe, you know, did sacrifice my health then but my blood; I always went for my regular blood tests, I was very good, you know, try and have a few nights off a week but as I've gotten older and as you become a boring post-graduate student you don't have much time to be drinking anyway so; my liver should have recovered by now. But yes I had to be a fresher, everyone's got to be a fresher, you come to university for a reason, don’t you?
Age at interview:
Age at diagnosis:
Charlotte is a Quality Team Member. She is married and plans to have children in the future. She is white British.
You don't drink?
No not really. I used to but obviously then when I started all the medications; luckily I got lots of my drinking out the way when I was about thirteen, I used to drink loads but no since I've been on the medications I just; I obviously don't go out much because of how I feel and when I do I like to kind of like know what's going on around me and I like to be able to have a bit of control over myself because when it mixes with the drugs I just don't feel safe and if I collapse or something where I've been out with people I don't necessarily know that they'll be there to take me home and stuff whereas now obviously if I did I know hubby would get me home. But no I don't particularly drink. I'm too scared of how it reacts with the tablets and now I'm not drinking because I want to have a baby but no drink doesn't bother me, don't really touch the stuff.
People who chose to limit the amount of alcohol they drunk did so for various reasons. Some said it was a personal choice – they simply didn’t like the taste, felt no need to drink lots or found it harder to deal with hangovers as they got older. Others limited their intake for medical reasons. Doctors and nurses advised people not to drink whilst taking certain medications, such as methotrexate. People also talked about the negative effects of drinking alcohol the next day. They said the fatigue would be more severe, the pain worse, and mobility (such as walking) reduced. Some said they would suffer for a week if they drank too much. They also said that they worried about “losing control”, hurting themselves or getting into danger.
David is studying Economics at university. He is single and white British.
Okay then and in terms of drinking alcohol. Is that also moderated?
Yes, very much so. I don’t at all. I try not to not that any of my medications are will counteract with it, I just think that with my fatigue as it is, alcohol tends to have the effect of exacerbating that even more so and when I wake up in the morning, the pain can be quite bad as it is, so if you have a hangover on top of that pain the combined affect is not very good. And it’s not very good for the wellbeing because if you feel even worse you know it’s going to make the pain even worse, so accelerate I think. So I try not to but, you know, I don’t forbid myself. It’s not a strict rule. If there’s somebody’s birthday, I’ll maybe take one drink just to just to be social because I don’t I don’t want to stick out like a sore thumb and people to try and change the way they are about me. But generally, I don’t choose to drink if I don’t have to drink.
Okay then and that’s not something based on doctor’s advice. This is a personal choice?
Yeah, completely person choice because while I’m on sulfasalazine, which is a type of, it’s called a disease-modifying anti-rheumatic drug but there’s another form called methotrexate and that does interact with alcohol quite violently but with the medicine that I’m on, it has no affect with alcohol at all. I just choose not to.
Okay and being a university student, what’s that like?
It’s strange. It’s not as bad as last year because people tend not to go out as much because of the work they have to do and because the increased workload being, if you have a day off because of the recovery of the night before, you know, you start to mount up work on top of what you already have. So it’s not as common but I find it, with my friends that I go out with, we can maybe go to the pub occasionally and I don’t have to drink and that. I just have to, you know, I can take a soft drink or whatever. So it’s not, it doesn’t really cause much of a problem and quite a lot we go out eating. So that doesn’t involve drinking either. So it’s not so much as a problem for me but I can see it being a problem for someone with friends that who enjoy like drinking. That could cause, you know, quite a problem because if they like to go out drinking for a sustained amount of time, you know, you might get left behind. So I can imagine it’s a problem for some people, but for me in my situation it’s not that much of a problem at all.
People who drank more than the odd glass sometime said that they wanted to go out, relax and have a good time. Some felt that having fun on a night out was worth the pain the next day.
Rebecca works in customer services. She is white British.
I’m not the kind of person that’s like go out every weekend and get completely bladdered things like that, but if it’s a night out for a friend’s birthday or something like that I don’t want to be stood there at the bar trying to figure out what’s got what unit’s in it, and because of my medication what, what I can and can’t drink.
It’s just, it’s just tedious especially on a night out where you’re meant to be enjoying yourself and every other part of my life is run by the knee , so I can’t do this, I can’t do that, I have to watch this, have to watch that. So it’s like on the night out I can’t, I just, it’s the one time I reckon I’m actually out to let loose and you know have fun, and I try as best as I can just to pretend that the knee isn’t there, just pretend it’s not there so I don’t want to be stood there trying to count different things and things like that.
And I find it really annoying when everybody is really drunk around you, and you’re sober. And what I can’t, and it’s like normally I’m alright, but if I’m on a night out and I’ve paid to get into the clubs and things like that and then everybody around you is so drunk and just being ridiculous and then you’re sat there and just getting annoyed by all the stupid things that they come out with, and stuff like that. Especially when you’ve paid for the taxi, paid to get into the club and things like that. It’s just, it’s not worth it. It’s, I get the risks and I get why I shouldn’t drink and things like that. And I don’t drink most of the time, but on a night out I’m not, I’d rather not worry about it.
Sometimes people’s symptoms appeared to improve after a few drinks. Some said they temporarily felt less pain and would become more mobile. After drinking Michelle felt like she could “walk for a mile” and “jump up and down”. She would overdo it physically and be in “agony” the next day. If Rebecca was having difficulties with pain and mobility her friends would pick her up in the car and take her to the pub to take her mind off things.
Elizabeth is a full-time university student. She is white British.
Definitely less than a normal teenager. I don’t mind going out for a night out, if I’m feeling okay, go to a club but I don’t get so drunk that I don’t remember anything or you know I have to be able to go home so I get really, you know I can’t, I can’t be so off my face that I fall in a ditch somewhere, or can’t get back or you know, I’m also a very organised sometimes just like, “Okay, how am I gonna get home?” Am I gonna get a cab home, I’ll get a car home, I’ll text my Dad who will come and pick me up.
But, yeah I don’t go out clubbing that much because it’s energy. You know you don’t get a hangover the next morning you get achy, you get pain, you can’t walk. And if you’ve got, if you’ve got to do something the next day you won’t be able to do it. So you’ve kind of just got to think in advance, well I had a good night out but I’ve really, for the rest of the week I’m just terrible, I just feel terrible.
So I really don’t drink that much don’t really like the taste, but then again if you are a bit tipsy you are a better walker, it’s just a fact you know. I was on crutches, a bit tipsy; I was off my crutches like “It’s a miracle.” Yeah that was one of my party tricks actually, ‘cos I would be with my friends and they’ll just all be like, trying to catch me, “Oh my God she’s off her crutches, she’s gonna fall,” I was just like, “No guys, I can walk, I’m Jesus.” ‘Cos, ‘cos you don’t feel the pain, ‘cos I don’t, the first thing to go is like I can’t feel my legs and I’m just like, “I’m floating,” I don’t know it’s just pain free. But then again I don’t drink very much.
People on medication planned their drinking so it interacted less with whatever medication they were on. Deni said she was able to drink because she was not on any medication.
Kyrun lives at home with his mum, stepdad and two brothers. He is a college student. He is white British.
I don’t drink when I have my tocilizumab a week before or a week after. Because it affects it really badly, because I learnt from my mistakes. It makes me puke tremendously, I’m out and it makes me so dehydrated when I haven’t got like the tocilizumab in my system, and I know like when I have it, loads of it pumped into me in the week after, before it’s like proper getting like all over my body you can feel it and it makes you when you drink it makes you just try to chuck out all like the substances that the drug, drink so. But my nurses said there’s no harm in you having a drink now and then, but doctors are like, “No don’t drink.” But it’s, they say you can, it’s not, it’s not illegal to drink with medication so it’s your own personal choice, that’s how I think about it. And if it makes you feel good at that particular time then do it.
Age at interview:
Age at diagnosis:
Rebecca works in customer services. She is white British.
Do you get ill if you drink because of the methotrexate? As in vomit?
No I don’t. Which at first ‘cos, see I know that it can make you really ill, but especially when you drink and with the methotrexate and I know that it can make you sick, so at first, when I first started to drink on it, I don’t drink a lot on it, but you know I drink a little bit and get a little bit tipsy or whatever, but I’m not one of these people that likes to get completely bladdered anyway. I don’t like being, it’s like the people that you see that can’t walk or just in such a mess they don’t know who they are, where they are, I don’t like being like that anyway, I’m one of these happy people so I like to get a little bit tipsy, and stay at that level and just dance. But no, I’ve never got sick off drinking and taking the methotrexate, which is good I suppose.
I take methotrexate once a week as a four tablet piece sort of once a week that dose, but I normally take it on a Sunday because we always have a Sunday dinner as a family, we’re always sat down at the table. And that’s, they say to take it with a big meal, so I was like that’s as big as it’s gonna get, so I always take it on a Sunday evening after I’ve had that meal. So really I suppose that is true ‘cos the only nights I’d ever go out is a Friday or a Saturday night, ‘cos I work for the rest of the time so those are the only times that I would ever go out and drink. So I don’t drink during the week, so I suppose that is true ‘cos I suppose that’s the time where its least in my system so I’m due to take the next dose on the Sunday.
But I don’t know, I’ve never had an effect from it, but admittedly I’ve never tried drinking on like a Monday night or something, after taking it. So I don’t know. Maybe.
People sometimes felt pressured by peers to drink alcohol. For example, David Z had a drink on people’s birthdays so he didn’t “stick out like a sore thumb”. He said the amount of drinking that went on at his university went down in years 2 and 3 because people had more work to concentrate on. Lu was told she was “boring” by a stranger in a club because she didn’t order an alcoholic drink. Some didn’t want to reveal that they had arthritis so made up excuses about why they couldn’t drink.
Lu is a recruitment consultant. She is white British.
But maybe that’s something that I’m just really sort of lucky to have. Now it’s a bit different at work because I’ve quite recently started, there’s only like one person that knows I can’t drink, so he’s constantly on the lookout now, so he’ll, when he’s pouring my drink he’ll just pour something that we pass off as vodka and coke, but it’s not, it’s just coke. Or you know I’ll get to my third drink and he’ll be like, “Okay, have you had enough?” But yeah I’m lucky in that sense. But yeah there is a massive stigma, there’s a massive pressure, definitely at university, even at school, later on at school, even now there’s a pressure to drink. But you’ve just got to be strong willed enough to be like, “Well look, I’m having you know, no I’m not drinking tonight,” or, “I’m gonna have two, but it doesn’t mean that I can’t have a good time.”Or that I’m any less of a, you know a better person for it. ‘Cos you know if you’re still fun then what’s, what’s the issue really?
Some of the people we spoke to enjoyed going to pubs and clubs even though they only drank soft drinks. They saved money that would have been spent on alcohol and were able to drive home after a night out. People who avoided alcohol even joined in drinking games - instead of drinking alcohol they drank soft drinks or ate chocolate. Some found activities that they could enjoy with friends that didn’t revolve around alcohol, such as eating in restaurants or gaming. Others hung around more with friends who didn’t drink.
There are decreasing numbers of young people smoking these days. Smoking is known to cause serious conditions like heart disease and lung cancer. People with arthritis may have additional problems related to smoking. For example, people with ankylosing spondylitis sometimes have reduced ribcage movement when they breathe which can then in turn make smoking related problems such as cough and recurrent chest infections more troublesome. To prevent lung damage the best thing people can do is stop smoking altogether but this can be difficult if you have been smoking for some time. Speak to your doctor about quitting smoking.
Some of the people we spoke to didn’t smoke for health reasons. David Z had asthma and said smoking would make it worse. Kyrun knew that smoking could cause damage to his lungs, or even give him lung cancer. He said it was his problem to worry about. He felt that smoking hadn’t affected him yet. Dean felt that smoking “takes the edge off” stress. Several people smoked to be social on a night out, but didn’t smoke regularly.
Kerrie is a self-employed baker. She is white British.
That’s my one downfall. I think I take it a bit more seriously now like I think for so long I was told that I couldn’t drink, couldn’t do all these things and it was kind of like that was the one habit that I was like, “Well, that’s mine. You know, I’ve always done that. So you can’t take that away from me.” But now it’s more of a case of social smoking, so I’ve gone from, you know, considering what aspects it has on my health quite seriously now. So no, I’m not allowed to do it as much as I’d like to but I suppose the odd one occasion when I’m with friends in the pub or something like that but no, I wouldn’t class myself as a smoker.
Some of the people we spoke to talked about illegal drugs. Some felt indifferent to illegal drugs but others were against them for health reasons, particularly if they were taking prescribed medications. A few people told us they had used marijuana (cannabis) for pain relief. One person smoked a lot of marijuana over a long period of time and said it was the best pain relief she had tried. She would like to see more medical research into its benefits and believes the law should be changed. There is no medical evidence to date that supports the use of marijuana for pain relief in arthritis. However, there’s increasing concern around the use of cannabis during the adolescent years when the brain is still developing, so excessive use in all young people remains concerning for health reasons. Visit our 'Drugs & Alcohol' section for more information about young people's experiences of alcohol and illegal drugs.
Kerrie is a self-employed baker. She is white British.
I wouldn’t even contemplate it. The cocktail of drugs that I’m on at the moment, I think adding anything else into the mixture of that would terrify me. And purely, I just wouldn’t recommend it to anybody because I just see how important health is now, you know, and what you take for granted. So to be putting things like that into your body and into your system, whether you have arthritis or not, it just totally defeats the object of trying to be healthy.
And, you know, again my opinions on that have changed as I’ve grown up and as I’ve battled with this disease, you know. At university, things were very different, you know. It seemed to be all around you and it wasn’t, you know, a big deal or anything like that but now it’s kind of got to the point where it’s like, why would you force something upon yourself that will make your health worse if you have the choice not to? So that’s kind of where I see that.
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