Managing JIA

How is JIA managed?

Early diagnosis and active, long-term management provides the best chance for a positive outcome for your child.

Management of JIA will be specific to your child, depending upon:

  • which type of JIA they have
  • how/where it is affecting them – how many joints, which joints, which non-joint symptoms eg uveitis (eye inflammation) are present
  • how active the condition is – whether it is ‘flaring’ or in remission
  • how well your child tolerates and responds to the medicines prescribed to treat the condition and other management interventions.

The management of your child’s JIA will need to be monitored closely and changes made from time to time to be responsive to any issues as they arise.

Any management plan will need to involve both medical and physical therapies to ensure that all aspects of your child’s health, growth and development are monitored.

Remember, your child’s body is still growing so they need to do the things that all children do to grow big and strong such as exercise, have a healthy diet and lots of fresh air and sunshine. Like all children, they also need lots of fun and laughter.

Who can help to manage my child’s JIA?

To achieve the best possible health outcomes, the management of your child’s JIA will involve a team effort over a long period of time. It is important that you and your child are at the centre of the care team, involved in all aspects of health management and decision making. This means having open, honest discussions with team members and asking any questions that you have along the way.

Depending on the child’s individual needs, the team may include:

  • Rheumatologist (paediatric rheumatologist if available)
  • Paediatrician
  • General practitioner (GP)
  • Rheumatology nurse (if available)
  • Physiotherapist
  • Occupational therapist (OT)
  • Ophthalmologist (specialist eye doctor)
  • Podiatrist, Orthotist
  • Dentist
  • Pharmacist
  • Child psychologists/Counsellors/ Play therapists/Social workers
  • Teachers and school support staff
  • Other family members – siblings, grandparents and carers.

Developing a relationship with members of the health care team is vitally important. Remember that you know your child best and this information will be invaluable for members of the health care team. (see working with your healthcare team)

For tips on preparing for your child’s appointments/consultations see Finding out your child has arthritis.

What treatments are there for JIA?

There are many different treatments available for JIA.

What works for one child may not work for another and finding the right treatment for your child can involve a process of trial and error. While this can be frustrating for all involved, it is important that you stick with the process to ensure that your child gets the best possible treatment for their particular type of arthritis.

The overall treatments used for JIA aim to:

  • prevent or slow damage to joints and/or progression of the illness
  • reduce symptoms including inflammation, stiffness and pain
  • assist your child’s normal growth and development, and ensure that they are able to get back to their usual activities and lead the most normal life possible.

Medicines 

Medicines will play a major role in the management of JIA. As a parent you may feel anxious about the prospect of your child taking these medicines. This is natural and understandable but they are very necessary for the best long-term outcomes for your child. It is important that you have the opportunity to discuss any worries or questions that you have about the medicines with the prescribing doctor.

Medicines in JIA today not only treat symptoms but also target the underlying disease, slowing down the progression of the condition.

The most common types of medicines used to treat JIA are:

Pain relievers (analgesics)

Analgesics are medicines that can relieve mild to severe pain. They work by blocking pain signals from being sent to the brain or by preventing the brain from receiving or working out what these signals mean.  Common pain relievers for mild to moderate pain include paracetamol, codeine or combinations of these.  These medicines do not reduce the inflammation present in JIA.

Non-steroidal anti-inflammatory drugs (NSAIDS)

NSAIDS relieve both the inflammation and pain around the joint.  However NSAIDs do not slow the progression of the illness or  reduce the risk of joint damage. Examples of the many NSAIDs include ibuprofen, naproxen and diclofenac.

DMARDs (disease-modifying anti-rheumatic drugs)

DMARDs can slow the progression of JIA. Although researchers don’t fully understand how some DMARDs work, the believe they dampen the immune system’s attach on joint tissues. Methotrexate is the most commonly used DMARD in JIA.

Other DMARDs that may be used include azathioprine, hydoroxychloroquine, leflunomide and sulfasalazine.

Corticosteroids

Corticosteroids, often referred to as steroids, are a man-made form of naturally occurring hormones produced by the body. They can provide rapid and powerful reduction of pain and inflammation for children with arthritis.  They can be given as tablets, as eye drops, by injection into a joint or by a drip into a vein.

Biologic DMARDs

‘Biologics’ subdue the immune system by blocking natural substances called cytokines.  These are substances found in excessive amounts in the blood and joints of children with JIA.  Increased levels of cytokines cause inflammation, which results in the symptoms of JIA, and can lead to joint damage. By blocking particular cytokines, biologics reduce inflammation, lessen the symptoms and help stop further joint damage.

The biologics available in Australia under the Pharmaceutical Benefits Scheme (PBS) to treat JIA include adalimumab, etanercept and tocilizumabAnakinra and infliximab may also be prescribed occasionally.

Managing pain

Pain is a very common symptom of JIA, even when children are on therapies that are effectively treating their underlying condition.

High levels of pain can result in children with JIA being less physically active and may reduce their participation in school, social and family activities.

It can also result in sleep disruption and poor sleep quality, which in turn can cause daytime fatigue, reduced mood and increased sensitivity to pain, essentially creating an ongoing pain cycle.  See Good sleep habits for tips on how to give your child the best chance of a good refreshing sleep.

A range of interventions, including medicines, use of hot and cold treatments, relaxation and distraction techniques, deep breathing, massage, gentle stretching and exercise can assist in relieving pain.  See chronic pain and dealing with pain.

Members of the JIA healthcare team can offer suggestions and interventions that actively address your child’s pain.  A comprehensive, multidisciplinary approach will provide you and your child with techniques and skills aimed at limiting the impact of pain on your child’s physical and psychological health and their social and educational development.

Physical activity

Physical activity is essential for good health and wellbeing in all children, and even more so for children with JIA. It assists to:

  • relieve stiffness, improve joint mobility and range of movement
  • maintain/enhance muscle and bone strength
  • improve physical function and independence.

It is important that your child remains as active as possible, every day. This may mean finding physical activities or sports that they enjoy but that do not cause too much discomfort.  Generally, non-contact sports will be best for children with JIA to reduce the risk of joint injury or damage. Low impact activities such as cycling, yoga and swimming are ideal as they do not place too much stress or strain on joints.

In addition your child should have an individually tailored exercise program that they do every day. Your child’s physiotherapist or exercise physiologist can advise you on suitable exercises.

See Finding out your child has arthritis for more detailed information on managing and living with JIA.

Your local arthritis office can also offer information and support services.