Disease Modifying Anti-Rheumatic Drugs (DMARDs)

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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.
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).
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.
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.
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.
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.

Last reviewed November 2018.

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