OK so steroids are extremely useful drugs because they work very quickly and are very potent and strong anti-inflammatory drugs. The problem is, however, they do have significant side effects in the long term. So in children and young people with arthritis one of the issues that doesn't affect adults is the effect of steroid on growth, and so again we try and limit our use of steroids and thankfully now we've got many more effective drugs that can take over once the steroids have been used in the acute setting. So the commonest use of steroids now in juvenile arthritis is primarily using it directly injecting it into the joint - called inter-articular steroid injections - will be done, if we do a lot of them, will be done under general anaesthetic or if we're doing just one or two will be done under local anaesthetic, and they're very effective, controlling the inflammation within in a single joint and will last three to four months benefit.
The next, steroid tablets... we used to use them a lot but now we have got more effective treatments thankfully so we prefer using those. We can give steroid into a drip, usually over three to five days; that's particularly common in systemic onset arthritis where they may be very unwell with high fevers and their arthritis and rash and feeling very unwell with anaemia, and to get control of that disease quickly, steroids are very effective and then we switch them onto whether it be methotrexate or another medication to take hold, rather than putting them on long term steroids. The problem with long term steroids in young people is the effect on growth, the effect on their bone strength because the bone strength is built up until your mid-twenties so this is a critical time for the skeleton being formed and steroids particularly can affect that. But there's always a balance because if you leave the disease uncontrolled, you also have those risks, so there's a balance of using steroids carefully and at the correct time, but as I say over the last ten years using them a lot less because of the better treatments now available.
Steroids are used to reduce inflammation and swelling. They’re also used to reduce 'systemic' features such as anaemia and fever when associated with certain types of arthritis (such as systemic-onset JIA). Steroids are usually injected into a young person’s joint. In more severe cases steroids may be given in tablet form, or as an injection into the muscle (a depot injection), or as a drip.
Steroid joint injection
A steroid mixture can be injected into an inflamed joint to ease the symptoms of arthritis. Some people said that joint injections were painless. Others felt pain during the injections but said the injection pain was not as bad as the arthritis pain. If people have joint injections in their feet or legs they are asked to rest as much as possible and be “non-weight-bearing” for 24-48 hours. This ensures that they get maximum benefit from the procedure.
Jazmin is a full-time university student. She is white and black Caribbean.
The injections then, were they steroid injections?
Oh yes they were into the joint, yeah and that was just; it's really funny in like I used to actually go with it because I just it, it tickled. I don't, like my doctor would find it really strange actually, she took a picture of it. But like…
She took a photo of you giggling?
Yeah I was like, "How's the injection?" because; oh no she's like, she has loads of patients and she's like saying, "You're the only one that actually finds it enjoyable," and like she's actually like showing these pictures to like other kids and saying, "Look it's not that bad," sort of thing. Yeah I don't know it's just because I just felt it, yeah it tickled but yeah it was a steroid injection and yeah that would work for about a few weeks and then it would wear off.
And the steroid injection, did that help the pain?
It's more like to reduce the pain because I know what obviously, in exams we write quite a fair bit so I was getting pain because unfortunately the hands, the wrists that has, yes it's usually just my writing hand and I don't know how to write with my left hand although I've been told I should probably learn how to do that because it might help. But yeah it's like, it's mainly just like, because I know like we know that pains coming, like we take the injection and just you know to minimise the pain, that will come sort of thing, just to numb it but really.
Age at interview:
Age at diagnosis:
Tom is an A-Level student preparing for university. He lives with his parents. He is white British.
Are they painful?
I’m not going to say no, ‘cos they are painful. But if you think about the pain that you’re in beforehand and how long that’s gone on for, they literally take three minutes, if that. It’s completely worth it. I mean you do get a bit worked up beforehand. I start shaking which is always bad ‘cos then my legs are wobbling like there and the doctor’s trying to hold them down and it’s a little bit stressful but definitely worth it.
I mean you, the worst bit I think is when they’re pushing in because you just think about the needle going in. I mean I don’t like the thought of going inside a body, like I hate bones, I hate big wounds. So when the needle’s going in you can feel it going through each layer of skin, or the muscle. You can feel it get to the joint and actually like pop inside the little thing with the fluid in it. And that’s the worst bit. Once it’s in its fine. And then taking out is like two seconds. So I think it’s not that bad.
How quickly does it take to work?
I think after about a day and a half you start to feel a bit better. You’re not supposed to move for two days. And I think the thing that I’ve learnt from my experiences is don’t move. ‘Cos if you move it kind of erases the effects that it’ll have. I mean I had one done, my first one then I was taken in a wheelchair to the car and carried from the car to my bed. Didn’t get up for a day and a half, and then I was so improved, it was amazing. Then the next few ones that I had I made the mistake of walking from the hospital bed to the car and then from the car to my house and like moving around the house a bit too much I’d say don’t do that because after that it didn’t help half as much as the first one did. So I think definitely don’t move unless you want to go to the toilet.
That’s fascinating. I’ve not heard people say that, well that’s fascinating.
Yeah I’d recommend including that because that’s what I’ve learnt.
It makes it a waste otherwise if you just walk, even a few steps, the effects go down so much. You kind of waste having it and they say, if you say, “I want another one,” then they say, “Well you’ve had one a couple of months ago. Obviously we need to do something stronger,” and you just think, “No, I walked. It’s not that bad really. I just want another injection.”
And is it in all the affected joints all the time? When you have the injections, your steroid injections?
Oh, yeah I just have it in the ones that are swollen. It’s like if something becomes swollen I’ll say “I’ll have it injected please?”
You can literally just ask can you? And they’ll do something for you. Okay.
I mean to start with they did invite me in for a little thing just to make sure it was swollen, but they seem to trust me now, I can just e-mail and say, “I’d like a joint injection,” and they’ll say, “Okay, here’s this day.” You just go in and the person doing the joint injection will check that it is in fact infected and swollen and they’ll just do it for you.
Young people with arthritis tend to have more joint injections than adults with arthritis. This is because the joints and bones of young people are still growing. Arthritis can affect the development of bones and joints if left untreated. Doctors inject affected joints to reduce inflammation and ensure normal growth continues. If the person is very young, or if there are several joints to inject, a doctor will give the person a sedative or general anaesthetic before injecting their joints with steroids. When young people move to adult services they will have injections when they are awake. This can sometimes be difficult so the rheumatology team will provide support to develop pain management and coping strategies.
Sabrina preferred to be asleep during her injections so she felt no pain. Tom preferred to be awake because he found being put to sleep “disruptive”. People who are given anaesthetic are told not to eat before the procedure (for example, people are asked to stop eating at midnight if they are having injections in the morning). Tom said going without food was “devastating” for a teenager.
Beth is a school student. She lives with her parents and is White British.
I come off the injections, I see how I go and if my joints are okay and it’s lasts a while then that’s good and I don’t have to go back on them. Sometimes I go back in the hospital to have a check-up to see how I’m going whilst I’m not on the injections, but if sorry, if I get if it’s like they get worse or decide to ache, then I have to go back into hospital and they have to give me a check up and see how my joints are, if I’ve got swelling or if they hurt anywhere then I’ve got to book my appointment to go back in to the theatre and have joint injections, but hopefully I’ll be okay.
And these are steroid injections?
But they do it when, they put you to sleep do they?
They put me to sleep yeah, but ‘cos I’m older now they could keep me awake. I haven’t had it awake before and I don’t want to. Because I’d rather be asleep and now knowing what’s going on than be awake knowing what they’re doing. So I’m trying to convince them if I do go back in again to have it back asleep because it’s, I find that it ‘cos you’re asleep you don’t know what’s going on, you’re not stressing about what they’re doing. And you’re just more calm and relaxed ‘cos you don’t know what’s going on.
Waking up after an anaesthetic can feel strange; people mentioned a range of different reactions, including feeling disoriented or dizzy or feeling unusually hot or cold. Beth needed help with walking afterwards. On rare occasions people had their joints put in plaster to keep the joints still and avoid the steroid medication coming out. Steroid injections can be really helpful but they do not work for everyone. Ryan had 10 injections when he was asleep but they did not work.
Sarah had her joints aspirated and injected at the same time as her joint injection. (‘Aspirated’ means that some of the fluid that had been building up round the joint is drawn out with the syringe). She said the process was “probably the most painful thing I’ve ever had”. Afterwards she felt a “cool sensation in her knees” and said that a “relief” came over her. Staff may offer people an anaesthetic cream (often known as EMLA cream) on their skin to help make the injection less painful. Often people find this helpful but Gemma did not like the cream, and was “terrified” when she first went for joint injections.
You may like to read Arthritis Research UK information about steroid injections, but keep in mind that the information is about adults and not younger people.
Nowadays it is uncommon for young people with arthritis to take steroid tablets. This is because of major advances in disease-modifying drugs (see ‘DMARDs’ and ‘Biological therapies’). Doctors also avoid giving young people steroid tablets because of possible side effects and the increased risk of osteoporosis (bone weakening). Uncontrolled arthritis, even without steroids, can lead to thinning of the bones but steroids can make this much worse. Doctors prefer to use steroid injections rather than tablets because they have a much lower risk of worsening osteoporosis.
Some of the people we spoke to took steroid tablets. David Z said his steroid medication “seems to take the edge off so I can just carry on with life”. When Lu was younger her mum used to wake her up at 5am so she could take her tablets. They would start working by the time she walked to school and relieve her stiffness.
People who took steroid tablets on a long-term basis reported both benefits and side effects. Jessica described steroid tablets as “the worst and the best drug” she had taken. The day after taking the tablets she could walk again but she eventually developed osteoporosis and needed hip replacement surgery and shoulder surgery (see ‘Surgery’). Kerrie had a similar experience.
Kerrie is a self-employed baker. She is white British.
What I was actually diagnosed with was avascular necrosis, which is a condition that is brought on by steroid use. I had been taking steroids and, basically, my hip bone had collapsed and died because of the side effects that steroids actually have on you in terms of stopping the blood supply to your to your joints. So even though it wasn’t necessarily related to the arthritis, it’s all kind of connected in some way, so.
So that that was because of the steroids?
Okay and was there anything else that you’ve had done?
No. That was my first operation as such. I’ve been advised, since then, of having, obviously, tests and things on those bones, that the left hip is probably going to need replacing in the next sort of couple of years, just from looking at, you know, x-rays of it that it’s kind of going the same way as the other one. Which, you know, now I’m comfortable with I know what to expect because I’ve been through one operation, even though it wasn’t very pleasant and recovery was a nightmare, it doesn’t put me off really about surgery because I know how much better I feel with the new hip, as opposed to the way I was feeling before and suffering all the pain, is just unbearable.
Okay and it was the, sorry, I think you’ve confirmed this, but this was a side effect of the drugs…
…you were taking for the arthritis?
And did you know that this was going to be a possible side effect?
Not really. Again, side effects are always there and readily available for you to study and see. I think if I studied all the side effects about all the drugs that I was taking, I probably wouldn’t take anything. You know, it’s scary and there are a lot of things that could go wrong but, at the same time, you know, I put my trust in the doctors and these side effects only are a one in however many chance anyway. So, you know, it’s very unfortunate what happened to me but it couldn’t be helped. You know, the steroids have helped me get through a very difficult period of time and stopped me from being in immense pain. So really I can’t weigh up what’s worse, you know. It’s just again, one of those things that unfortunately, has come as a consequence of dealing with my arthritis.
Sometimes people were given supplements to help combat bone problems. For example, Dan was taking a calcium supplement (Adcal) to strengthen his bones. Caitriona was taking calcium and vitamin D supplements to protect her bones from further damage.
Sometimes oral steroids make people want to eat more. Jessica put on lots of weight. By the time she was 5 years old she weighed 5 stone. Caitriona went from size 6 to size 12 “in a matter of weeks”. Some found it hard to get rid of the weight. The arthritis made it more difficult for them to exercise and dieting did not always work.
Elizabeth is a full-time university student. She is white British.
Have your thoughts or feelings about your body changed over time?
I do get quite annoyed just with the changes that I’ve had from medications. Like I was super skinny as a kid you know underweight, and then suddenly, that’s just from causes of arthritis but then suddenly I had to go on steroids and as a kid you don’t really get that, “You know what I’m eating a bit too much.” You’re just a bit like, “Yeah shove it in my face.”
And then I’d got to secondary school and I was like, “God I’m actually quite chubby.” And yeah just, and then I went through natural weight loss, as you just get older you just get slimmer and then I went back onto steroids and then I just went poop, popped out like a hamster. It was really starting to irritate me, just like the, it’s just a bit like a yoyo really, and I’m scared it’s going to get to a point where it’s going to be hard to lose the weight. So it does affect your body and your body confidence especially.
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Lu is a recruitment consultant. She is white British.
Because I’d been on steroids for quite a while, I initially went on them just to sort of get me through my GCSEs, and so about two and a half, three years later I was still on them, no four years later, four? Yeah about four years later I was still on them.
So because I’d just ballooned out and put on weight, it was literally like you could sort of prick your skin with a pin and you felt like you were going to go pop. I tried to get off them which obviously took a while, and you know there were negative side effects of that. But once I had come off them I’d obviously gone from so it was making you eat, they really increase your appetite, so I used to eat you know a meal big enough for two, half an hour later I’d be really hungry. I just had no control really over what I was eating or my appetite. And as soon as I came off them I didn’t know what my appetite should be, or what it was.
So I remember thinking, you know I’d get up in the morning and I’d have you know my Weetabix, and then half an hour later thinking, “Well normally I’d be eating something else right now, but I don’t actually feel like I need to.” And you know three meals a day seemed to really be something of a distant memory. Although it took a long while for me to know what, you know what my appetite should be and what it was. And I just remember like you know my friends were just like, “Oh my goodness, you used to eat so much and now you hardly eat anything.” And I was like “But yeah, I think that’s just relative to me.” So definitely took a good like say seven or eight months to get it back to normal because obviously I eat, you know you lose all the steroid sort of puffiness as well, so you go through quite a lot of changes, but yeah, that’s quite, that was quite interesting.
Occasionally people lose weight when they take oral steroids because they can cause indigestion. Dan’s steroids put him off eating so he lost weight.
Other side effects that people mentioned included face-swelling, mood swings, bad skin including acne, rosy cheeks, and (when used for a long time in childhood) restricted height. Dean had diabetes as well as arthritis. His steroids made his blood sugar levels go up so he had to stop taking them. Taking steroid tablets can also cause easy bruising, stretch marks, blood pressure problems and erratic periods.
We spoke to two people who missed a dose or stopped taking steroids. They both reported side effects. When David Y missed his tablets he experienced lots of pain. When Lu stopped taking her tablets she had mood swings and hallucinated.
It’s very important that people on steroid tablets don’t miss a dose or stop taking them altogether. This can cause people to become very unwell. You must always seek guidance from a doctor before you stop taking steroids and you should always carry a steroid card.
See Arthritis Research UK's website for more information about steroid tablets, but keep in mind that the information is aimed at adults.
If young people are very unwell with their arthritis they can be given steroids through a drip. People are usually attached to the drip for about 2 hours and may experience similar side effects to people who take steroid tablets (see above). People on a drip may also experience a change in their sense of taste, heart rate or temperature. These side effects usually stop once the drip has finished.
Charlotte is a student at college studying a BTEC in Forensic Sciences. She is white British.
They had pull down beds. It was very cool, yeah. The steroid infusion wasn’t very nice though. It was like, they told, they said about the effects that when it was going to happen they leave this, a really horrible taste in your mouth, and I was like sat there eating chocolate trying to get rid of it, and nothing was getting rid of it. So I just had to sit there whilst I was having this thing, with this bad taste in my mouth. And then afterwards as well another effect is really rosy cheeks, which I get, from, even with the oral ones, so I was just like really really rosy and flushed in the hospital. And because of the medication that I was on, it was like the co-codamol which obviously makes you constipated and so they were giving me really disgusting laxatives that I had to drink. And because I was in hospital I had to do, drink it there and then. So that was really horrible. There was no escaping.
When Emma was first diagnosed she was given steroid injections but she only felt the benefit for two days. Her doctor put her on a steroid drip which worked. It took 3 hours and her mouth tasted of copper. She remembered sucking on Werthers Originals to stop her from feeling sick but she had so many sweets she was sick anyway.
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