What is Juvenile Idiopathic Arthritis (“JIA”)?
Approximately 12,000 children and young people in the UK have Juvenile Idiopathic Arthritis (JIA) which represents 1 child in every 1,000 under the age of 16. There are approximately 1200 new cases of JIA diagnosed every year.
JIA is an autoimmune disease, where your immune system gets confused and attacks healthy joint tissue, causing inflammation. Research is ongoing as to why this should occur. JIA can sometimes be seen in association with other autoimmune conditions.
This inflammatory disease principally affects the joints, but may also affect other organs including the eyes.
- Juvenile means a child aged less than 16
- Idiopathic means unknown cause
- Arthritis means inflammation of the joint(s)
We have described below the different types of JIA because the treatment regimes will vary from one form of JIA to another.
There are also variations in the parts of the body affected, for instance the lining of thejoint, the surrounding tendons and which joints are involved.
This is when four or fewer joints are affected in the first six months. Your child may go on to develop arthritis in other joints after the first 6 months and this will then be called “extended oligoarthritis”.
This is diagnosed when five or more joints are affected in the first 6 months. This can further be categorised as “rheumatoid factor negative” and much less commonly “rheumatoid factor positive”.
Enthesitis Related Arthritis (ERA)
This is when arthritis is associated with inflammation in the area where the tendons attach to the bone (enthesitis). Places this can typically affect your child are the heel, the arch of the foot or around the hips.
Can affect any joint but often involves the fingers and toes. There may have been a swollen, ‘sausage’ shaped toe, when your child was younger that got better on its own; this is known as dactylitis [dak-ti-li-tis]. Psoriasis is a scaly rash typically affecting the knees and elbows. Often, psoriatic arthritis is diagnosed when there is no evidence of psoriasis in your child but there is a family member with psoriasis and some typical changes to the nails.
Systemic onset JIA
This is diagnosed if your child has arthritis and a persistent rash and fever.
This means your child’s symptoms do not fit neatly into any one of the other types of JIA.
My child has been diagnosed – what symptoms?
These could a swollen joint or multiple joints, heat to the area, a high temperature and rash. Very young children may not be able express verbally where it hurts or how they are feeling but you might notice them not using their arm properly or shuffling on their bottom more rather than standing up.
A formal diagnosis of JIA should always come from a paediatric specialist rheumatologist working within a multidisciplinary team. However, prior to this, sometimes a suggested diagnosis maycome via a physiotherapist, occupational therapist, paediatrician or podiatrist etc.
To get to a diagnosis for your child you will need to provide the specialist with a history of symptoms such as swelling, pain etc. A clinical examination will be made, which involves looking at, and feeling and moving every joint. In addition, some children and young people might need to have a blood test and an ultrasound scan or plain x-ray (or both). Taking shorts (for example) with you to this examination will make it easier for both parties.
It can be helpful at diagnosis or just after to keep a folder for storing all information in
one place. It’s easy to forget names, dates and times etc.!!
The diagnosis is the first key step in determining the treatment plan. Once treatment starts the team’s aim will be to get the JIA under control and ultimately into remission. Management includes medications, as well as keeping your child active to increase stamina and strength. This will enable your child to get back to their daily activities and routine as soon as practicably possible.
JIA is a fluctuating condition, and whilst the health care professionals aim for control,
there may be times when the conditions and symptoms are more active. This is called a “flare”. A minor flare could be anything from slightly swollen finger, not impacting daily routine, to something more significant, causing morning stiffness and difficulty doing normal things like coming down the stairs and doing up buttons.
When newly diagnosed It’s important to ask the consultant or specialist nurse what specifically you should look out for during
a “flare” and how to support your son or daughter; this will help to determinewhether you should or shouldn’t get in touch. The doctors and nurses are very supportive and happy to help you with advice on how to self-manage JIA in between clinic appointments
Most common treatments?
It’s important to say that whilst it can be a scary prospect to consider that your child may have to take medication for many years, not taking the drugs which the health professionals recommend can have long term consequences.
It is never an easy decision to put your child on long term medication, but unfortunately the evidence shows that not taking the prescribed medication can lead to damaged joints which never recover. Your child will be continuously monitored and side effects can usually be effectively
dealt with in a number of ways. Untreated or under-treated JIA in children could allow the development of other conditions and further health problems.
Usually the first drugs prescribed on diagnosis include Methotrexate, Sulfasalazine and Hydroxychloroquine (usually only given to older children). These reduce the immune system attack.
They take time to work and are used long term to control the disease dependent on the type of JIA. Etanercept, Adalimumab, Tocilizumab, Abatacept and Canakinumab (rarely used) are Biologic drugs, which target particular cells or chemicals in body’s immune system.
Who else is involved in my child’s treatment?
Where there is a complete multi-disciplinary team of health care professionals, your child should have access to a Consultant Paediatric Rheumatologist or Adult Rheumatologist who sees children, Occupational Therapists, Physiotherapists, Ophthalmologists (eye specialists), Play Therapist, Paediatric Nurse Specialist, Podiatrist, Psychologist and Radiogapher. Not all children and young people will need to see all these health care professionals.