Disease progression

Arthritis treatment has improved considerably over the last 10 years and the outlook is positive for people using modern medications such as biological therapies. Sometimes people improve a lot but still have to take medication to stop their arthritis from getting worse again. People can also go into remission (their symptoms go away) and find that they no longer need treatment.

According to Arthritis Research UK (2015), around 70% of young people with Juvenile Idiopathic Arthritis (JIA) go into remission. This means that around 30% of young people find that their arthritis remains active into adult life. Some young adults with JIA have joint damage that might limit their daily activities and a few may need joint replacements.  Occasionally if arthritis has not been controlled in childhood, or steroids have been used in high doses for many years, people can be physically smaller than average or develop osteoporosis. However, because of modern treatments the majority of people do not experience such problems.

Most of the people we talked to had on-going symptoms. In this section we talk about these symptoms and how they changed over time. Most commonly people described how swelling and pain spread from the first place they had noticed it to other parts of their body.

The number of joints affected by arthritis
The people we spoke to sometimes said that more joints became affected over time. People talked about different areas of the body being affected such as toes, ankles, knees, fingers, wrists, elbows, shoulders, necks, jaws and areas of the spine. Some people said certain joints were affected but others said arthritis affected every joint.  Gemma has pain all over but her knees are worse. Her back and neck have been hurting ever since she had an accident whilst climbing. Jazmin has arthritis in all of her joints but said that her fingers, wrists and ankles hurt the most.

When arthritis extends to another joint it may happen suddenly or be a gradual process that takes months or years. For example, when Dean had a new joint affected it happened “straightaway”. Elly said that her arthritis extended “quite quickly” from her hands to her feet but then “gradually moved everywhere” as she grew up. Lu’s arthritis started in her small joints such as her knuckles, fingers and wrists. Over the next two years she developed problems with her toes, feet, ankles, elbows and knees and shoulders.

Because of new treatments like biologics young people rarely require joint replacements (see ‘DMARDs’ and ‘Biological therapies’).

Different symptoms in different parts of the body
People’s symptoms may also depend on the area affected. Cat said that she gets achy cramps in her ankles, throbbing pain in her shoulder and her neck feels stiff and uncomfortable. Muscle weakness was sometimes talked about too. Physical activity has been proven to be very important in protecting joints affected by arthritis. By improving muscle strength, less strain is put on the joint. An occupational therapist, physiotherapist or nurse specialist can advise on pacing to gradually increase physical activities (see ‘Staying fit and healthy’).

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Describing pain and other symptoms
People sometimes used graphic language to describe how the pain got worse. Kyrun said to imagine what it feels like to rub their knuckles against a cheese grater until they hit the bone. Catherine said that she gets a painful “grinding” sensation when she walks. Chantelle said it feels like “tooth freeze” in her joints. Creaking or clicking feelings were also common.

Several people said that they lived with the pain so long they have got used to it. People reported stiffness, aches and swelling in different parts of the body – and they could not always be sure which parts of the body would be affected each time.  Zoe’s joints get “squishy” when there is a build-up fluid in them. People also mentioned that their joints would be hot to touch during a flare up. Deni said that her joints become “boiling hot” like “hot irons” or “hot coals”. Treatment aims to reduce the number of flares people have. If you are experiencing frequent flares (hot, swollen stiff joints) you should discuss this with your rheumatology team. They can advise you on how to relieve the symptoms of a flare for short periods, or your medication may need to be adjusted.

Symptoms that come and go 
People talked about various times they noticed when their symptoms got better or worse. They talked about their symptoms getting worse in cold and damp weather, early in the morning, or during times of emotional stress. Ruth said that her joints felt “a little better” during her period and wondered if this might be for the same kind of hormonal reasons that makes some people feel better when they are pregnant. Zoe only got flare ups if she did “excessive stuff”. Cat always felt pain in her wrists but the rest of her joints are “unpredictable”. Sonia woke up with stiffness in the morning but by lunch time it wore away. Sometimes people ask their doctors for steroid injections during a flare up. This helps the swelling go down and relieves the pain.
Lacking energy or feeling extreme tiredness (fatigue) is a common issue for people with arthritis. Some of the people we spoke to struggled with fatigue as they got older. Zoe said that in the mornings her legs feel heavy like they were “welded” to the bed (see ‘Fatigue,energy levels, and sleep’).
Permanent damage
We spoke to a few people with severe forms of arthritis who didn’t have access to the latest treatments growing up. These people were in their late teens and early 20s. They talked about how arthritis caused permanent damage.
Dan said his hands are “curling” and he struggles to swallow big things because he has restricted neck movement. Melissa’s hips feel stuck in one position. People also discussed how their cartilage had worn away over time and caused joint damage. Some people had bones rubbing together and this caused lots of pain. Doctors may recommend surgery to replace joints if this gets very bad, or put caps on the end of bones which have worn away. Having surgery can help with the pain (see ‘Surgery’).
Physical support
When the arthritis is very bad people may need to rely on parents for help or need crutches or wheelchairs to get around. Marie talked about her son Ryan being in too much pain to cut up his food, hold his glass or get out of bed. At one point he had a home tutor but became well enough to return to school when doctors put him on the drug tocilizumab (see ‘School, college and university’ and ‘Biological therapies’). When Jazmin was stiff her mum used to help her dress. Jessica and Kyrun spent years using wheelchairs because of pain. This changed when they had hip replacements and doctors found medication that helped control the arthritis. Both of them can now walk around (see ‘Surgery’).
Elizabeth and Elly developed uveitis (inflammation of part of the eye). Uveitis most commonly develops in children with less than 4 joints affected by arthritis. There are no symptoms at first, so regular screening by an ophthalmologist (eye specialist) up until the age of 11 years is very important. Uveitis can develop even when the child’s joints are fine and well controlled.
Symptoms improving and remission
Some of the people we talked to described how their symptoms improved with medication (see ‘Painkillers and NSAIDs’, ‘DMARDs’, ‘Biological therapies’, ‘Steroids’). Others talked about the ways in which surgery made a difference by reducing pain and making people more mobile (See ‘Surgery’). Remaining active and eating healthy was also very important (see ‘Staying fit and healthy’). So was getting enough rest and pacing yourself (see ‘Fatigue, energy levels, and sleep’). 
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Last reviewed November 2018.

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