…so from the point of view of the treatment plan in arthritis again will vary depending on whether this is juvenile arthritis or adult type of arthritis because many of the drugs that work in adult arthritis don't work in juvenile arthritis, so hence the importance again of getting the diagnosis right from the start. But the first line of treatment if somebody came and you diagnosed an arthritis in the young person, the first treatment would usually be a non-steroidal anti-inflammatory drug, a NSAID, of which the ones in young people that can be used again are much fewer than in adults and the common ones are ibuprofen (Nurofen), feldene (Piroxicam), naproxen, Voltarol (diclofenac), indomethacin. We tend to use piroxicam mostly in young people because it's a once a day dose so you don't need to remember any other doses, so it's easier for school age children but everybody will be slightly different. The anti-inflammatories, they are what they says on the tin. They are... work against the inflammation and help the pain and stiffness; they do not cure the arthritis, they help the symptoms. So these are symptom relievers and in the younger child, younger young person, it does take a while for those anti-inflammatories to work whereas in adults they'll work very instantaneously so again different ways that our bodies use drugs. But so regular non-steroidal would be the key treatment. Paracetamol is a painkiller but it is no effect on inflammation, so if the pain is due to inflammation then NSAIDs are the one drug of choice. But you can use paracetamol on top of ibuprofen if necessary. If you've got the headache on top of the arthritis you take the paracetamol but the non-steroidals are the ones that will help the pain and the stiffness which are the common symptoms in inflammation.
Painkillers (sometimes called analgesics) are drugs that help to reduce pain, and are commonly used by people with arthritis to ease their pain until it gets better or during flare-ups. Arthritis Research UK advises that “You don’t need to wait until your pain is severe to use painkillers. Take them as the packet advises or as your doctor suggests... You can also take them before you exercise so you can carry on without causing too much discomfort.” (2015)
Chantelle is a full-time school student. She is engaged to be married. She has no children and is white British.
And does the pain change over time?
Yeah. The medication helps. The medication helps control the arthritis, it don’t cure it, it just controls it. So it’ll like, it can settle it, so when it’s inflamed it settles it from being inflamed. And like it’s still painful but not painful, I can still, I can bend my joints if you, if it’s inflamed I can’t bend my joints it really hurts. So the medication allows me to bend my joints and the painkillers allow me to be out of pain. So it’s all sort of controlled it in a way and it helps me to get on with day to day life like going to school and getting on. I still need the odd help with the bags and my Mum’s help, sometimes to wash me and stuff like that. But other than that it’s okay.
Some painkillers have several different names. For example, paracetamol is sometimes called Panadol. Arthritis Research UK has an A-Z of different drug names which may be useful for people who want to find out what kind of medication they are using.
The people we talked to mentioned different types of painkillers, including one specific group of painkillers called non-steroidal anti-inflammatory drugs or NSAIDs. This group includes ibuprofen. In this section we first talk about anti-inflammatories and then other painkillers.
Non-steroidal anti-inflammatory drugs (NSAIDs) reduce inflammation, which helps to ease joint pain and stiffness. Many commonly used NSAIDs such as ibuprofen are available to buy over the counter. Others are available on prescription. There are fewer NSAIDs available for people under the age of 16 compared to adults. Young people may require higher doses of NSAIDs and may have to take them more regularly compared to adults.
You can read more about NSAIDs on Arthritis Research UK’s website, but keep in mind that the information is for adults and not young people.
There are many different types of anti-inflammatory medication. Dan took nabumetone (Relifex). Charlotte Y used to take diclofenac (Voltarol). Charlotte Z, Catherine and Zoe took naproxen. Gemma used to take piroxicam (Feldene) but she was in “tons of pain”. The doctor thought that she had become immune to the medication and gave her naproxen to take instead. Diclofenac was another common type used by those we spoke to. Occasionally people feel sick or get other stomach symptoms when they take NSAIDs, and may need another medication to help protect the stomach. Some of those we talked to took omeprazole to help reduce stomach acid.
Elly is a full-time university student. She is white British.
What consequences if you don’t take them?
It’s things like, I’m not sure. The folic acid I said before is the one that they upped for my ulcers, so I guess I just get worse ulcers than normal. The diclofenac I notice, sorry if I don’t take all the time as much as I do at Uni, I can just feel it a little bit, but my joints are a bit worse than normal. And the other one, the omeprazole I have no idea ‘cos that’s to do with the diclofenac, so I should probably take that every day.
But I only recently came on it so I’m not sure.
Are you worried about missing medications?
I only ever get worried if I miss the main ones, ‘cos like for example the diclofenac is PRN, like it’s totally up to me, the folic acid I know that I can just take it once a week and I haven’t felt any different. I probably should worry about it, but I just am quite scatty so I just forget. And whenever I remember I don’t know where things are so I’m like, I know they’re all on my floor I need to organise them and put them in one place.
Ibuprofen helped reduce Ryan’s joint swelling. He tried the powder version and the tablet version. He preferred the tablet because it did not melt in his mouth and was easier to swallow. When Catherine was younger she only took ibuprofen if she had a bad spell. Jazmin had a phobia of tablets so she took a liquid form of ibuprofen.
Some of the people we spoke to had side effects from the ibuprofen. Lu took ranitidine (Zantac) to protect her stomach from the ibuprofen.
Michelle is a university graduate and works in the field of education at university level. She is planning to move to France and to work either teaching English or doing graduate studies. Ethnic background/nationality: White British.
And ibuprofen, I have side effects from that. That’s, I find that quite an effective pain relief. And I had been taking ibuprofen slow release, 1600 milligrams per day. But then in January of this year I was getting really really bad stomach pains. And my GP rang me one day when I was at work and he said, “Are you all right?” I was like, “Yes.” “Well, your blood tests are showing that you’re not all right. You’re very very anaemic and you shouldn’t be in work. So I suggest you leave now and, and we’ll get you admitted to hospital, possibly for a blood transfusion.” So I went into hospital, but they, they kind of kept me in to do observations, took me off the brufen and put me on iron tablets, ferrous, not ferrous sulphate, ferrous fumarate. And that gradually kind of brought my blood count up. And they said, “Oh, you don’t need a blood transfusion now. Just stay off the brufen as much as you can, and take iron tablets.”
So the ibuprofen sort of produces this anaemia?
The ibuprofen causes a stomach ulcer, which then bleeds. And then because I’m losing blood I’m getting anaemic.
What do you take for the ulcer? Lansoprazole?
What did they give me? Yes, I take lansoprazole, yes, again as and when. I’m getting very lazy with taking my medication. I think I’m invincible sometimes. And also Asacol, I’m meant to be taking that quite regularly. Is it, yes, I think it’s Asacol, that what it’s called. So many drug names.
When Bradley’s arthritis was at its worst he took 6 ibuprofen tablets a day. He started to take fewer tablets when his methotrexate started to work and his arthritis improved. When Lucy was first diagnosed she was taking ibuprofen but it did not stop her having a stiff neck. Things got better when she started taking methotrexate (a DMARDs) and anakinra (a biologic).
Dean discovered that he was allergic to anti-inflammatories when he was in hospital. He developed rashes and his throat closed up. At the time of the interview Dean was on painkillers but not anti-inflammatories. He said his pain was being managed but his swelling and night sweats had not gone down. He wanted a different kind of medication to help with these symptoms.
Cat and David Z took the NSAID etoricoxib to reduce their inflammation. David also takes a proton pump inhibitor (like omeprazole or lansoprazole) to help reduce the chance of digestion problems that the medication may cause. He used to get stomach cramps which affected his eating but the proton pump inhibitor has helped “enormously” with these problems.
Student, single, no children. Lives at home with mother. Ethnic background/nationality: white British.
I’m still on Indomethacin right now. It’s my anti-inflammatory. It’s probably something that I’ll always have. It’s the drug that I believe gets me up in the morning. It means that I can get up and feel great. I would never want to come off that unless it was posing a serious health risk in which case I would be deeply saddened because it does quite a lot for me. And I could probably come off; I don’t know if I could come off my strong pain killers at night. It depends on the conditions. In this country with the humid, the humidity the way it is I don’t think I could sleep at night with my arms being, they’re quite restless. Even though they’re in splints they get quite uncomfortable. So, yeah, I stay on that and I probably will stay on that as well. It’s great. It’s an anti-inflammatory it works better than anything else I’ve tried.
NSAIDs relieve the symptoms of arthritis but they don’t stop it from causing damage to the body. Doctors prescribe a different type of drug called 'disease-modifying anti-rheumatic drugs' or 'DMARDs' to help prevent damage. (See ‘DMARDs – disease-modifying anti-rheumatic drugs’).
We spoke to people who were on different types of painkillers. People mentioned paracetamol, co-codamol, tramadol, morphine, and pregablin. Some of the medications could be bought 'over the counter' (in a shop). Others had to be prescribed by a doctor.
Some of the people we talked to had tried different painkillers over time. For example, Charlotte Z and Kerrie were given different painkillers by GPs and A&E doctors before they were diagnosed. Kerrie said that her pain was so severe that the medications “didn’t scratch the surface”. Charlotte Z kept returning to the doctor and asking for different painkilling medications.
It is important to find out what is causing the pain in the first place so that doctors can prescribe the right treatment. For example, if the pain is being caused by inflammation then an NSAID will reduce the inflammation and relieve the pain. If muscle spasms are causing the pain then massage therapy may help. Often when painkillers don’t work it’s because the type of pain is better managed by another drug or strategy.
Sometimes people took more than one painkiller at the same time. For example, both Chantelle and Charlotte Z took paracetamol and tramadol. Some doctors debate the effectiveness of taking these two painkillers at the same time, but the young people we talked to sometimes felt it was beneficial. It is very important to check first with a doctor or pharmacist that it is safe to do this; if you take two different versions of the same type of painkiller you may get too high a dose. Sometimes people took different types of medication alongside the painkillers such as anti-inflammatories, DMARDs (see 'DMARDs'), biologics (see 'Biological therapies') or steroids (see ‘Steroids’).
Kerrie is a self-employed baker. She is white British.
I’m receiving several different treatments at the moment. Standard things such as anti-inflammatories. I am receiving steroid tablets daily, which are gradually being reduced. Things to counteract other medications, so stomach protectors.
So things like omeprazole, which I’m sure quite a few people have heard of. In terms of actually disease modifying drugs, I have weekly injections of methotrexate and the highest dose possible. I am now on a new biological drug called rituximab, which I’ve been on for two, no, sorry, about eighteen months now, which is an infusion I receive every six months in hospital. I also take anti-depressants to help with my mood, you know, with the emotional aspects of coming to terms with my condition. I’m trying to think. There’s such a long list of them. I have suffered with anaemia as part of my condition, so I’m now on things like iron tablets to try and build my haemoglobin levels back up and, obviously, then there’s the rest sort of pain medication I suppose to try and keep the pain under control. Which can be anything from, you know, over the counter medicines like paracetamol to sorts of stronger painkillers like Oramorph (morphine) and tramadol, which are usually taken on a regular basis for me just purely because I’d rather have it in my system so that pain doesn’t begin to affect me, as opposed to, you know, having to wait until pain arrives and then taking painkillers.
Jessica’s doctor prescribed paracetamol to take whenever she needed it. If she had a bad day she would take it four times a day. Michelle took different paracetamol medications, such as Solpadeine (which also contains codeine) and Calpol, and found the paracetamol “takes the twinge away from certain pains”.
Most painkillers come in tablet form but sometimes people don’t like taking tablets. Jazmin developed a tablet phobia because her methotrexate tablets used to make her sick, so she would only take crushed paracetamol “as a last resort”. Michelle sometimes took soluble paracetamol which dissolves in a glass of water and said it tasted horrible.
Painkillers like paracetamol don’t usually have side effects but some stronger painkillers can do. Charlotte Z was given co-codamol in hospital. It made her constipated due to the codeine content. Doctors gave her “disgusting” laxatives to drink so she could go to the toilet. She also used tramadol as a painkiller, which can make people feel sick, and she took omeprazole to help protect her stomach. Sarah said co-codamol made her feel sick so she only took it if she was “desperate”.
Kyrun took morphine to help with the pain, which made him drowsy and he slurred his words. It also made him itchy and light-headed. His mum wondered at one point if he had taken illegal drugs.
Taking tramadol made Chantelle sleepy, so she took it in the evening so it didn’t interfere with her school. Zoe described tramadol as a “potent painkiller”. She gets very tired when she takes it and said her pupils become “huge” like she is “stoned”. Her friends at school asked her if she had been doing drugs. Charlotte Y found it gave her hallucinations.
Charlotte is a Quality Team Member. She is married and plans to have children in the future. She is white British.
Oh tramadol's a scary drug. I go a bit weird on tramadol, I hallucinate, I have really weird dreams which feel really real. Get really sick on it, it's just not a nice drug but when you're in as much pain as you can get sometimes and that makes you sleep or it take, just take the pain away for a few minutes, you'd do anything. I was in so much pain the other day I said that if it weren't for the fact that we were trying to have a baby I'd have been taking tramadol that day because that's how much pain I was in. That's kind of like my scale of how much pain I'm in.
So what, what do you hallucinate with, with tramadol?
I see lots of things , my husband's had ten eyes and three noses before.
And I thought all my teeth had fallen out at one time and was crying and hysterical, yeah it's quite a horrible drug.
It sounds horrendous.
Absolutely terrifying. Gosh OK.
I think the dreams you get with it, I still get dreams now which I've figured out is actually the pain so they're kind of like the pain dreams with the hallucinations of the tramadol, so yeah they're quite scary and weird.
You're the first person to say pain dreams, what are pain dreams?
Well to be honest until I came off all my tablets I thought it was the tablets making me dream but no it's the pain. Just really real dreams, you have dreams and you wake up and you, I couldn't tell you whether or not they were real or not because they feel so real and, and horrible dreams where you wake up sweating and crying.
So are they predominantly nightmares or is sometimes they are at times?
Sometimes they can just be really vivid dreams not, not necessarily like your nightmares of monsters and things like that. Quite often have dreams that people who I know die and or like I'm stuck in a fire, they're just real vivid, yeah strange.
OK and they're quite regular with the tramadol?
Yeah I think the tramadol makes them so much bigger because the pain in itself makes the dreams there and I still get them now that I'm off all my medication but when I was taking the tramadol they were just so much more and strange as well really like bizarre things coming in but what you'd still think were real, yeah.
Dan is trying to set up his own web-design business. He is white British.
If I ever forget to change one of me patches, that’s horrible. It’s the worst feeling ever forgetting to change a patch.
Because it’s the same kind of medication what they give heroin addicts so it’s, if you forget to change it you get bad withdrawal symptoms so I’ll start itching all over, feeling hot and cold, headaches, unable to sleep and that’s just forgetting to change one day. So it’s horrible.
Wow. What kind of patches are these, sorry, what’s the name of it?
It’s buprenorphine. It’s like a morphine based.
You mentioned the withdrawals there. You didn’t mention pain. Is pain something which gradually comes back as opposed to maybe in one day does the patch leave you in a lot of pain?
No, if, well, really I don’t notice the pain if I’ve forgot to change the patch because the withdrawals are that bad, I just can’t think about anything to be honest and it’s sent me into hospital a couple of times where I’ve forgot to change it and I’ve had a bad reaction just from forgetting to change it for one day.
When you were hospitalised, what were you suffering from then?
At the same time, I’d just started a new medication because I’d reacted wrong, badly to that and because I’d forgot to change the patch, they both reacted badly together and it sent me kind of crazy and my friends started getting worried about me so mum took me into hospital and I ended up going three days without sleep. So they had to give me something to just knock me out of it.
Okay. Do you mind just saying what you meant when you say you went a bit crazy?
Well, I started I actually started hallucinating because I’d had an allergic reaction at the same time as withdrawal symptoms so I’d actually gone over to my friend’s house and I just asked her if I were a butterfly and it kind of freaked her out so that’s why they says, “We’d better get you to hospital.”
Do you remember much about what happened?
Yeah, I remember it all. It were, I’d started twitching really badly and the doctor at A and E could see that something were happening and that and at first they said, “Oh, you’ve got to try and get some sleep.” “Oh, I can’t. I’ve been trying for three days.” So then they gave me some diazepam to knock me out and then after I’d actually got some sleep, the patches eventually started kicking in and I started feeling better after a couple of days.
It’s important to keep in mind that painkillers are only one form of pain management. Some of the people we spoke to tried to manage their pain by exercising and eating healthily (see ‘Staying fit and healthy’). People paced themselves throughout the day so they didn’t “overdo it” and tried to rest as often as they could (see ‘Fatigue, energy levels and sleep’). Sometimes people distracted themselves from the pain by meeting friends (see ‘Friends and social life’).