Rheumatology handbook

Welcome to the Rheumatology handbook. We've put together some information about rheumatic conditions and how to manage them.

The Model of Care for the Paediatric Rheumatology Network is published by the Agency for Clinical Innovation.

We work with John Hunter Children's Hospital, Orange Base Hospital, Liverpool Hospital and both services at the Sydney Children's Hospitals Network.

This handbook provides information for patients and families of kids and young adults with a rheumatic condition.

What's an autoimmune disease?

The immune system is designed to protect us from infections and abnormal cells such as foreign substances.

When the immune system mistakenly attacks some of its own healthy cells and tissues it leads to an autoimmune process sometimes resulting in disease.

What causes this to happen, in most cases, is unknown.

Depending on your illness/disease, the parts of the body that are affected are different. For example in juvenile idiopathic arthritis, the autoimmune process leads to inflammation in the joints that can lead to joint damage. For patients with lupus, it can affect the skin, kidneys and blood vessels.

Are rheumatic conditions contagious?

Rheumatologic diseases are not contagious.

Rheumatological diseases are not directly inherited—for example, if a parent has a rheumatological disease it does not mean the child will have that disease.

When we ask families if they have any other family members who have an autoimmune disease, they often, but not always, report there is other family members who have had some sort of autoimmune disease.

This is described as a ‘predisposition’ to a disease. It means that under certain conditions, a child ‘may’ develop a particular illness.

Can chronic illness be cured?

A chronic disease is an illness that persists for three months or more. Some chronic illness can resolve and be ‘cured’.

However, most chronic illnesses persist for long periods of time or even a lifetime. Many can be brought under control by medical intervention and good management, and may go into ‘remission’ where no symptoms are experienced.

Sometimes chronic diseases ‘flare up’ and the illness may for a time become acute, or severe. Causes can include environmental stress such as sun exposure, but in many cases the reasons for flare ups are unknown.

Can alternative therapies help?

After a child is diagnosed with a chronic illness, some people look to non-standard medical therapy, such as complementary or alternative therapies. It is natural to wonder if there is anything you can do to help your child heal, or to think a ‘lack’ of something has caused their illness.

There is little scientific evidence to support the efficacy of many alternative or complementary therapies, but if you are using any of them, please tell your health team.

We’d like to make sure nothing your child is taking interferes with their medical treatments.

In terms of diet, there is ‘limited’ evidence that fish oils can benefit adults with arthritis, however trials have not shown similar effects in children.

It’s our preference your child has a well-balanced diet especially if your child has been very unwell prior to diagnosis or during early medication. If you have questions about nutrition or want to change your child’s diet, your healthcare team can refer you to a dietician.

Can my child join a clinical trial?

A clinical trial is a research investigation to test new treatments, interventions or test as a means to prevent, detect, treat or manage various diseases or medical conditions.

Patients volunteer to participate in clinical trials. All clinical trials are reviewed for safety before any patients are enrolled in the trial.

In paediatric rheumatology, many of the clinical trials are testing the safety and effectiveness of new medicines in children with rheumatologic illnesses. All clinical trials have potential benefits and risks and only some are designed for children.

The phases of a clinical trial can be summarised as:

  • Phase I: Tests first-time biomedical interventions to small groups of people to evaluate safety.
  • Phase 2 : Studies biomedical interventions in several hundred people to determine how effective it is and to further evaluate its safety.
  • Phase 3: Studies the efficacy of a biomedical intervention in large groups of people. These studies compare the intervention to standard care or other interventions and are used to monitor adverse effects.
  • Phase 4: These studies are done after an intervention has been approved and marketed to the general population. They monitor the effectiveness and collect information about any adverse effects associated with widespread use over time.

The Australian Clinical Trials website, supported by the Australian Government, provides detailed information about all aspects of clinical trials including procedures and governance.

The Paedriatic Rheumatology International Trials Organisation provides information on international trials.

Why does my child need an x-ray?

X-ray is the oldest and most common form of medical imaging and used to view, monitor, or diagnose joint injuries, infections and other types of problems.

It is often the first test that a doctor will request to make sure there that someone with joint or limb pain doesn’t have a broken bone.

An x-ray machine uses radiation, to create an image of the inside of your body. This beam is directed at the area being examined.

Sometimes an x-ray includes a contrast agent which is a type of dye. The patient drinks or is injected with the contrast agent, which highlights or ‘contrasts’ parts of the body so they show more clearly on the x-ray image.

What is an MRI used for?

Magnetic Resonance Imaging (MRI) is a type of safe, painless testing that doctors use to see the body’s organs and structures. MRI uses a magnetic field and radio waves to create detailed pictures of the body’s insides.

Unlike CAT scans or x-rays, an MRI doesn’t use radiation. An MRI scanner is a large doughnut-shaped magnet that often has a tunnel in the centre. You lie on a table that slides into the tunnel. Some hospitals and radiology centres use what are called “open” MRI machines. They have larger openings and are helpful for people who are afraid of being in tight, closed-in spaces.

MRIs are used to:

  • provide clear images of body parts that can’t be seen as well with an x-ray, CAT scan, or ultrasound. An MRI is helpful for looking at a person’s eyes, ears, heart, and circulation system. It also helps doctors see inside joints, cartilage, ligaments, and tendons.
  • detect problems in the brain, spinal cord, skeleton, chest, lungs, abdomen, pelvis, wrists, hands, ankles, and feet.
  • help doctors identify infections and conditions that cause swelling inside the body.
  • allow doctors to see when there isn’t a problem inside the body — it helps eliminate or ‘rule out’ things like tumours.

Magnetic resonance imaging (MRI) is safe and easy. No health risks have been associated with the magnetic field or radio waves, since the low-energy radio waves use no radiation. The procedure can be repeated without side effects.

What is an ultrasound used for?

Ultrasound imaging uses high-frequency sound waves that pass through your body. The sound waves are reflected by, or bounced off, internal organs and tissues, and the waves are recorded and displayed by a computer.

Ultrasound scanners consist of a computer, video screen, and transducer. The transducer is a small, handheld device about the size of a bar of soap, attached to the scanner by a cord. The transducer generates the sound waves and detects them when they are reflected.

Most ultrasound exams are done by moving the transducer on your skin over the area to be examined.

What is a CT or CAT scan used for?

CT scans actually have nothing to do with cats, except that when people talk about them, they usually say ‘CAT scan’ instead of ‘CT scan’.

CT stands for computed tomography which is a kind of x-ray. Unlike regular x-rays that show your bones and other organs in the body, a CT scans shows this in much more detail. The images are displayed as thin slices of the body on a computer screen.

Like x-rays, CT scans don’t hurt.

As with an x-rays, your child is exposed to some radiation during the procedure.

What are side effects from the medication?

Many people worry about the side effects of the medications you, or your child, has been prescribed. It’s perfectly natural to worry about this, particularly when you will be on the medication for an extended period of time.

When a doctor prescribes a medication, this decision is not made lightly. A risk analysis is always part of the decision to start medication.

Prolonged inflammation of joints or organs can result in long-term problems and these risks are weighed against any potential side effects of medication.

The doctor will always try to balance the medication with the most benefit against any known possible side effects. At the time of starting a new medicine, the health team will explain the possible side effects of any new medicine to you.

We want you and your child to ask questions and are committed to providing you with accurate and up-to-date information about all aspects of treatment. So even if you think of a question after your consultation, write it down and bring it to the next appointment. If you are worried, contact the team and ask them the question.

If you are Googling about specific medications and their side effects, we recommend looking at websites supported by strong scientific evidence.

What does 'idopathic' mean?

The word ‘idiopathic’ means that the disease develops spontaneously or without a known cause.

Many rheumatological diseases, such as Juvenile Idiopathic Arthritis develops spontaneously without a known cause.

When can my child go back to school?

An important part of a child’s routine is attending school. We encourage all children to attend school and participate in extra-curricular as soon as possible.

Depending on your child’s illness, your child may require a transition back into their school routine.

We recommend that families meet with your child’s school to discuss the diagnosis and the need to balance participation and accommodation. If your child requires support, your treatment team can provide a letter for you to give to the school to describe your child’s illness and their requirements. Most schools are quite responsive but if you require additional support, contact your treatment team for further support.

If your child requires assistance to attend school, speak to your team for assistance. The occupational and physiotherapist may be available to assist with practical supports, if needed.

Arthritis Australia has developed a resource for teachers, which both parents and teachers have found helpful in supporting children and young people to remain engaged at school.

Can my child play sport?

It is very important for people with chronic illnesses to stay as active so that their muscles stay strong and joints don’t become stiff.

When first diagnosed, or when there is a lot of inflammation in the joints physical activity might need to be limited until the joint symptoms settle down.

The physiotherapist or doctor can provide specific advice about what types of activities are appropriate and will advise when it is safe to return to your usual level of exercise and sport.

In the long term the goal is to participate in sport at school and other activities.

  • This physiotherapy guide, although written specifically for Juvenile Idopathic Arthritis, provides general advice on physical activity.

What happens when my child turns 18?

If they receive care through one of the paediatric rheumatology services, when they turn 18yrs old they will need to start to receive their care in an adult facility.

Moving from children’s services to adults services is called “transition”.

Transition from children’s to adult services is quite individualised and there are support services available in NSW to support young people through this transition.

Some young people who have complex health needs or see multiple specialists or they live in areas with limited access to service.

Last updated Tuesday 6th February 2024