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 injections
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.
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.
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 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.
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 32kg (5st). 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.
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, skin problems including acne and 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.
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 Werther’s Originals to stop her from feeling sick but she had so many sweets she was sick anyway.