So DMARDs is a name, so - disease modifying anti-rheumatic drugs – and there are many in adult arthritis but in juvenile arthritis there really is only one and that is methotrexate. All the other DMARDs as used in adult arthritis have not been shown to be terrible effective in juvenile arthritis except potentially sufasalazine which is still used by some paediatric rheumatologists, but really methotrexate is the only one that has been showing in that type of arthritis. As I say there are other in the adult forms of arthritis all the DMARDs that they've used but in juvenile arthritis it's methotrexate, and that would be our…when non-steroidals don't control things or joint injections and in anybody who has got , you know four or more joints affected, we really have a low threshold of starting methotrexate fairly early now to get control of the arthritis.
One of the most common types of medication used by people with arthritis is disease-modifying anti-rheumatic drugs (DMARDs). These act by changing the underlying disease itself rather than just treating symptoms. They are not painkillers, but they will reduce pain, swelling and stiffness over a period of weeks or months by slowing down the disease and its effects on the joints. You can get more about DMARDs from Arthritis Research UK, but the information is aimed at adults.
The types of DMARDs given to young people will vary according to the age of the young person and the type of arthritis. Methotrexate is the most commonly used DMARD in arthritis diagnosed before the age of 16 years. Young adults with arthritis are also often prescribed sulfasalazine (particularly arthritis related to inflammatory bowel disease), hydroxychloroquine and leflunomide.
Methotrexate is often taken as a tablet or injection. It is occasionally given as a liquid. The people who had methotrexate injections sometimes gave it to themselves. Others preferred parents or healthcare professionals to give it to them. People had injections at home or in hospital. Some did not mind having injections but others struggled because of an extreme fear of needles or 'needle phobia', they were sometimes offered psychological help to overcome it.
Dean is a full-time student. He also works in retail. He is white British.
They put me on methotrexate tablets I think it was for the year after and they told me there'd be no side-effects with them but I got very ill with them, they made me sick and I couldn't sleep and then I went off them and they said that the injection form of it would be better for me and then…so I had to be trained to take that myself because it's used for cancer patients as well or something and Mammy was pregnant at the time and if it's spilt it would have been harmful for her like. So I started taking it but then I started taking panic attacks with it so I don't know if that was the side effects or just me but I was taking them anyway and I couldn't do it anymore. So then I withdrew from the injections myself and I was just on paracetamol for a while and now I'm on some other drug that I don't even know the name of.
OK. And tell me about the panic attacks.
I couldn't, I'd faint and then I'd black out and I wouldn't know what was going on.
And you suspected that they may have been caused by the injections of the methotrexate?
And did you discuss that with anybody?
I discussed it with the doctors but they said it was just me, I don't know. Because I'm used to taking my own injections but not that one and it made me feel sick as well so you know.
You used to taking your own injections?
Insulin OK. And so did you have to inject yourself with methotrexate?
And so tell me about actually doing that. What did that involve?
Involved, I had to take a lot of safety procedures doing it. I had to be isolated on me own, had, it didn't matter if I got it on my skin so then I didn't have to wear gloves but if Mammy or anybody else was around me they'd have to wear them and; so I just was on my own and I took it but then I'd get sick and then I wouldn't want to take it again if you know what I mean?
Why did you not want to take it again?
Because I didn't want the panic attacks and everything.
So how many times would you have taken it yourself?
Probably four of it, five months and then I got moved up to [town] to get it for the nurses to give me it instead, said it would be easier on me but then I'd still have panic attacks.
So how many times a day would you have to inject it?
It was only I think it was twice a week.
Age at interview:
Age at diagnosis:
Zoe is a GCSE student. She is white British.
I used to have it as an injection because I went to a counsellor for quite a while because I had a phobia of needles, which didn’t help when you need to inject yourself. But she taught me if you think there’s something good at the end of it, because I got promised a pair of shoes, so I was like, “I’m going to get through this for the shoes.” That I got my pair of shoes and I thought, “Right. I can do this.” And she printed out a little sticker, which I still have because if you put it up somewhere that you can see you feel proud of yourself that you can accomplish stuff like that. But I used to have it injection and I used to have this hypnotherapy CD every time like every week or something because I got so worked up about it. But I was getting on all right with it injecting it into my stomach. It sort of scared me in a way, because at random points I can feel the needle going into my flesh. Like I know it’s mental, but it feels like it’s just there and I think that that has scarred me. My mum calls me mental for it. I’m like, “Cheers, mum.” 'p>
But yeah, I think the thing that put me off it was I was injecting once and I injected too close to the surface and I got a bubble in my skin and I just freaked out, completely freaked out and I was like, “I’m not injecting it ever again.”'p>
People who took methotrexate sometimes said that the medication helped a lot. Some doctors stopped giving people methotrexate because their symptoms had improved or because they were in remission (their symptoms had gone away).
Can I ask if your thoughts and feelings about arthritis have changed over time then?
I think because with Brad it's, people don't know he's got it. We think that he's, he coped really well and thankfully, I touch wood as I say this, he hasn't had any flare-ups, it doesn't affect his life. He's walking, he's running, he's playing football twice a week, he's completely, I mean when we go, when he gets checked out, he's in remission so we just thank the methotrexate, and we don't - we did use to talk about it, we did used to say, you know, if he said, "Well I've got a slight niggle in my foot, can you have a look," but now it, we don't even, it's just the norm, we don't sit, we don't really discuss it unless he has a flare-up. I mean he did have one about coming on for a year ago I think, his ankle, it was the knee actually I think and we had to go for a steroid injection. When we got there for the injection it had pretty much gone down. He has been put on prednisolone in the past and that's obviously worked and he didn't even need the injection so…we just sort of, I think we think we're quite blessed really that yes he has got JIA (Juvenile Idiopathic Arthritis) but it doesn't affect his life thankfully.
Age at interview:
Age at diagnosis:
Sabrina is a school student. She is of Pashto heritage.
You’re not on methotrexate now are you?
So who decided you to... to not take methotrexate anymore?
My nurse. She told whenever I used to go to hospital she used to tell me if how I, how is it now? Do you feel any pain?
And when I used to tell her that, I’m okay now but then if she realised that she thought my pain is gone so she took me off the tablets for a while but if I had any pain, then she would put me on it but I haven’t been on it for about a year now, a year and a half.
Okay. Do you still suffer with arthritis?
I actually do and I don’t. It comes, it just comes when it when I do something that I shouldn’t be doing.
And is it in the same place as where it used to be?
No, it’s like spreading somewhere spreading somewhere else.
Where is affected now?
In my wrist and in my jaw because, when I’m eating, I won’t be able to open my jaw that wide and when I’m yawning, I wouldn’t be able to yawn and it’s like when you, when I’m drinking, I actually drink quite slowly and it’s like when I had a sip, I wait for every ten seconds and then drink another one because my jaw can’t open that wide and it’s really annoying me.
Is that always the case whenever you eat now or only sometimes?
It used to be when, before I had my injection, you know, my injections, when I was put to sleep and I had injections inserted me, it used to be then but now it’s okay now.
I’m just wondering whether you struggle to drink now? Do you?
No, but I think say if I like, if I waited for a couple of months to go, it probably comes again because you never know when it can come again. It just comes and goes.
Are you comfortable with going back to hospital for an appointment or going to the GP to get a referral again?
I don’t mind going but it’s like my... I’m sixteen and leaving school and it’s just it’s just my attendance I’m not expecting that amount of uncomfortable with it.
People sometimes said that the methotrexate did not work on its own so doctors combined the methotrexate with another type of medication. Kerrie started on the highest dose of methotrexate but she did not notice a difference until she took steroids and infliximab (see ‘Steroids’ and ‘Biological therapies’).
Methotrexate did not work for everyone we spoke to. Some people were taken off methotrexate altogether because there was no clear benefit from taking it. Sometimes people stopped taking methotrexate because of the side effects.
Some of the people felt sick taking it. Some were sick immediately after taking it, others were sick later on in the day or the next day. Bradley was sometimes sick before he took his medication because he used to get so worried about it. Charlotte Z discovered on Twitter that people ate ginger biscuits and carbohydrates to help settle their stomach. Lu took her methotrexate tablets at night so she would sleep through the nausea but she always woke up feeling sick. If Bradley had something important on like a GCSE exam he would take his methotrexate the day before or the day after his exam so he was not sick on the day. People were sometimes prescribed folic acid or anti-sickness drugs to protect them from sickness related to methotrexate.
Some people developed a phobia of medication because of the sickness. Because methotrexate is yellow some people had problems eating yellow foods or swallowing yellow tablets.
Jazmin is a full-time university student. She is white and black Caribbean.
Methotrexate – it's not my fondest memory taking that every week because it makes you puke it back up and I did not enjoy that at all and Mum would always find it hard to like encourage me to take it because I know what was going to happen and so like now because of that one little thing I have a complete phobia of tablets. I do not even think about it. I feel a little bit just apprehensive about it and everything but I was one of the first people to go on the liquid form, the injection form of it and that I felt relieved that I wouldn't have to take that tablet anymore but then I just like been, I was back, when I was a teenager obviously was like just lazy and couldn't be bothered to do anything so I tried to avoid it, doing it and taking it but yeah when it came to taking medication and going to hospitals, appointments and like missing school and everything I usually get like a little reward like , I don't know some chocolate sweets or like take me to the cinema or something, just you know little rewards to you know to encourage me to be ready for the next time when I'd have to go and take medication and everything so and everything.
So you, when you were younger you preferred taking the injections?
Well no, in early teenage years, the injection first came round because up to that point I was on that tablet so I; when my doctor asked me, like told me about this I was like, "Can I try it?" sort of thing because I did not want to be on this tablet, I didn't want. And yeah my body took it well so that's always good.
Methotrexate is obviously a very, very common medication and different people react differently to it. Is this the case where you took them, medication and then literally straight afterwards you were sick?
And were you kind of properly sick as well?
Properly sick like, bent over the sink sick and then we tried different methods like we tried to crush up yoghurts, that went down a little bit better but usually afterwards I did feel rather sick and everything and actually when I was on injection afterwards I did feel that nausea because obviously it just reminded me of like the tablet form so I actually took milk and that made me feel a little bit better afterwards. Don't know how but that did and everything. But yeah like every time I took that tablet I would just puke it back up. That was not great and everything, yeah.
Can I ask where there any concerns about the medication not being consumed by the body because you were bringing it back up again straight away?
No. Well there was concerns like they would try different ways to like give it to me and everything but I had like the blood tests because obviously being on methotrexate like it affects your liver and everything so you had to have regular blood tests so they like just, like checked that side of things so if it's like that but. I don't know, it like, even though it comes back up somehow they do, it like, the body does retain it somehow and like it did help even though it didn't help in a way. But yeah there was concern but it sort of like, they didn't know how to really solve that issue until that injection option came along really and everything so they just, different ways to try and take it really.
And you say, am I right in using the word phobia? Can I use that word?
Yeah. I really, any tablet at all, like, because if I'm in pain they like say take paracetamol like I refuse to take paracetamol and even if it's like the last resort taking a tablet I have to have it crushed up or something because just, yeah it just makes me feel really weird
Age at interview:
Age at diagnosis:
Sabrina is a school student. She is of Pashto heritage.
What was bad about the injections?
They used to sting and they used to make me throw up and I couldn’t like come to the, I couldn’t, the methotrexate’s colour was yellow and I couldn’t look at the... that injection with the things or the gloves because it used to make me throw up and if I saw the colour yellow, I used to throw up because it used to remind me of that.
It was the smell, I hate, I didn’t like it.
You know, you’re the second person to say that quite recently. I’ve never heard of that before where the colour of the medicine puts them off.
Yeah, it does. I used to stop eating egg. I mean egg, I like the yolk and I used to stop eating that because of the colour yellow.
Do you eat it now?
I do now, yes.
Yeah, I used to have this little icepack but I don’t go near it because it’s, I don’t like, it’s uncomfortable for me. I don’t like it because I only used to use it for when an injection was stinging me and after when my injection had come out, I used it. Now I don’t use it after that because I don’t like it. I don’t like going near it or touching it, even like, if I had, if the injection was in that place and it was like the boxes and the kind of needle and the bin, I didn’t used to go in that place because it used to remind me of the, when I used to have this injection and I couldn’t even touch the gloves.
The gloves, that used to put me off because, even though I’ve been off the methotrexate injections for about two years, I can’t go near the gloves because they make, they put me off, make me throw up. I just don’t like it. I don’t like the smell of it too.
Apart from the sickness, people reported a range of other side effects, including a reduced appetite, weight loss, stomach pains, diarrhoea, ulcers, itching, extreme tiredness and hair loss. Sarah hallucinated and had skin pigmentation problems. Catherine had a tight feeling in her chest. Some parents were worried about long-term side effects such as liver damage, which can be a problem with methotrexate. Michelle developed some scarring on her liver. The healthcare team will monitor people on methotrexate regularly to check that it is still safe for them to take, and that the benefits are still worth any side effects.
Different people will react differently to the various ways of taking methotrexate. For example, some were sick taking tablets whilst others were not. Some people had a phobia of injections whilst others did not (see ‘Emotional challenges’). Injections are more effective as the body will get the entire dose. With tablets some people will only get part of the dose due to variation in how the body absorbs the methotrexate. It is important to work with your healthcare team to find which is best for each individual.
Methotrexate works against arthritis by reducing the body’s immune response, the body's system for fighting off illness. This means that people also have lower immunity to other illnesses so some people got ill more often or found that when they did get ill it was more severe. Caitriona said that she was not allowed to take certain immunisations like the live polio vaccine in case it caused her to develop polio (though there is a non-live form of the polio vaccine which she can have). The healthcare team will keep a close eye on how well people are managing on the drug and change it if necessary.
People on methotrexate sometimes talked about taking alcohol. Some people didn’t like alcohol and others were afraid to drink more than the odd drink whilst on medication. Sometimes people said that they were happy to drink, but did so on certain days to avoid it interacting with methotrexate. (see ‘Alcohol, smoking and illegal drugs’). People also talked about sex and pregnancy. They knew that getting pregnant whilst on methotrexate could cause serious problems for the baby, and some talked about contraception or stopping methotrexate altogether in order to get pregnant (see ‘Relationships, sex and pregnancy’).
Some of the people we spoke to took sulfasalazine, though this is not used as much to treat JIA nowadays.
David Z took sulfasalazine for his ankylosing spondylitis (AS). He explained that the medication was good for people with AS. He is constantly monitored using blood tests for signs of liver damage. When Rebecca started taking sulfasalazine it did not work. She was supposed to take it during the day after a meal but she was working in pubs and clubs so was missing meals and sleeping all day. She then started a 9-5 job and took methotrexate with sulfasalazine. It was too soon to say if it was working or not. Ruth’s inflammation went down after taking sulfasalazine but she had itchy feet. Her doctor said she was allergic to the medication and took her off it. Deni found her symptoms carried on despite the drug.
Deni is a full-time university student and volunteer for Arthritis Care. She is white Scottish.
And was it sulfasalazine was the first medication you took?
Sulfasalazine. How did you get on with that?
Oh, I hated it. It was liquid. It was like an orange liquid and I had to take it twice a day and I gave my mum so much hassle, kicking, screaming, running, hiding, spitting it out, pretending I was choking. Every time, every day until it stopped, everyday yeah.
What was your problem with it, can I ask?
I didn’t want to take it. It tasted disgusting. I didn’t understand why I had to take it. I knew I wasn’t feeling very well but I didn’t really know why. I didn’t know what was going on. My mum used to get quite frustrated with me naturally, because she had to give me it but I didn’t want to take it. So we, it was it was like a kind of battle between the two of us, that’s what it became and I’ve struggled with medication ever since.
I got bad headaches, nausea, stomach problems, mouth ulcers, vomiting, oh, and it just made my arthritis worse. It didn’t take any of the side-effects away. It didn’t take any of the symptoms away. It just made it more inflamed. My temperature, just it wasn’t working.
People over the age of 18 with rheumatoid arthritis and psoriatic arthritis sometimes took leflunomide.
Michelle had side effects when taking leflunomide. She felt sick and had painful stomach cramps and had to go to hospital. Charlotte Y wanted to get pregnant so stopped taking leflunomide. Anyone who is taking medication for a long term condition should talk to their doctor when they become sexually active and particularly before getting pregnant. Some medications are known to affect unborn babies and doctors will be able to give advice on safety and other available treatments.
Charlotte is a Quality Team Member. She is married and plans to have children in the future. She is white British.
But along with that I'd also been on leflunomide which when I went on it there was, it was told there wasn't any like particular long term risk of it or anything but when it came to saying that we're thinking about having a family in November 2010, they go, "Oh this drug you've got to be off for a whole year before you can even start trying, it could be really dangerous." So then last November 2011 once I'd been off it a year went for my routine appointment and they told me that you actually have to be off it for two years, is the advice now so that, that was quite frustrating in itself so I had to have like a wash out procedure which was horrible, it's a horrible drink, gritty drink, it's bit like drinking sand I suppose which had to have in it , I had to have like specialised blood tests which had to be ordered from like The Netherlands or something and it was a lot of hassle and it was a bit frustrating because if I'd been told things like that before I wouldn't have ever gone on the drug because I'm obviously at, at an age where having a family is something which is quite likely. Lots of young people are likely to have a family at some point so I think that's definitely a drug which I think now they don't give to women of child bearing age which is a good thing. Eventually all the blood tests came back fine so they said we could go ahead and start trying so it's another drug I was on.
Lu was the only person we spoke to who had been on hydroxychloroquine. This is an anti-malarial drug more often used in adult rather than juvenile arthritis. It is also used to treat other conditions like lupus. This was the first DMARD she was prescribed and she was given a small dose. She took the medication with ibuprofen and steroid tablets. She also took ranitidine (Zantac) to protect her stomach. She said she “felt horrible” on the hydroxychloroquine and was later put on methotrexate.