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Juvenile Arthritis: New Hope

Many children suffer unnecessarily from the pain and deformity of arthritis – some because they’re not diagnosed in time, others because they don’t use the right medicine
By Karena du Plessis

She was three years old when she began to complain of sore ankles.

Soon the pain in the toddler’s joints got so bad she’d often burst into tears.

Shané Kleynhans’ parents took her from GP to paediatrician to GP. Numerous tests were carried out but doctors were baffled.

Then a paediatric rheumatologist diagnosed Shané and finally the Kleynhans family of Durbanville in the Western Cape knew what they were facing: arthritis.

The older kind of arthritis drugs helped only up to a point and the little girl’s knees were so sore and swollen that she couldn’t get up from the floor or out of the bath on her own.

“Shané was treated with methotrexate and cortisone – the standard arthritis medication – but she struggled with side effects,” says her father, Carel. “It’s difficult to explain to a child she has to continue taking something that causes nausea and makes her vomit. But we struggled along.”
Then when she turned nine her whole life changed in the blink of an eye.

Within a month after an arthritis specialist prescribed a new and expensive drug known as Enbrel her joints stopped aching. Soon the swelling around her knees disappeared and she could move around with ease – and once again play outside with other children.

Best of all, Shané started growing again after stopping the initial drugs. She has grown more than 10 cm in the past year and at almost 11 she’s now the same height as her friends.

“This has been a huge boost to her self-esteem,” Carel says. “We recently went to the awards evening at her school and she was one of the top 20 students. We were thrilled.” Shané is a shining example of how arthritis in children can be brought under control with this new drug.

WHAT IS ARTHRITIS?

Arthritis is a disease that causes pain and decreased mobility of the joints. The word ‘‘arthritis’’ literally means joint inflammation: arthro = joint and itis = inflammation.

What is juvenile arthritis?
This chronic condition causes inflammation in one or more joints and sets in before the age of 16.

Juvenile arthritis is a chronic condition causing inflammation in one or more joints and sets in before the age of 16.

It’s difficult to establish how many children are affected. Figures from Australia indicate one in every 250 children may have the disease and even toddlers as young as 18 months can develop it.

There are several kinds of juvenile arthritis. Although they all have joint inflammation in common the symptoms differ and they may therefore require different approaches when it comes to treatment.

The most common type affects four or fewer joints and sometimes the eyes as well. It often starts during infancy but may be outgrown.

Robert Grant (12) of Claremont, Cape Town, suffered from this kind of juvenile arthritis. He became unwell when he was 10 months old but was correctly diagnosed only eight months later.

The disease damaged his eyesight and he recently had an operation to correct a detached retina. He now uses Enbrel and can hardly remember the pain he once experienced, says mom Veronica.

Less common kinds of juvenile arthritis are those that affect more than four joints, or that affect the knees and back and are associated with the skin condition psoriasis.

One in 10 children with arthritis suffers from a fourth kind of juvenile arthritis which, apart from high fevers and skin rashes, may often cause inflammation in various organs. Inflammation of the cardiac sac can be fatal.

Because fever and a skin rash don’t initially look like arthritis doctors often think children with these symptoms are infected with some or other strange virus.

This is what happened to Lizzy Townsend (3) from Camps Bay, Cape Town.

‘‘When Lizzy developed a high fever and rash in December 2006 doctors assumed it was a viral infection,” says Bev, the little girl’s mom.

“We treated the fever symptomatically but the next three months were a nightmare because every afternoon it shot up sky-high. It rose to over 40 °C and remained there for a few hours before dropping again.

‘‘As time went by the rash also changed and came and went along with the fever. The only way to find out what was wrong with Lizzy was through a process of elimination.

‘‘After many blood tests and a bone marrow biopsy doctors finally established she was suffering from systemic juvenile arthritis.’’

No one knows why some children develop arthritis. So far all researchers have managed to establish is that some children have an inherited susceptibility.

When these children are exposed to certain diseases the arthritis gene is activated, but it isn’t known which diseases act as triggers. It may also be the body’s immune system that ‘‘switches on’’ the arthritis gene.

This ‘‘switching on’’ of genes leads to a series of inflammatory reactions in the membranes around joints. A variety of proteins are released during the inflammatory process, causing them to become red, sore and swollen.

This reaction eventually causes so much damage to the membrane that the bones of the joint start grinding against one another. Later it starts attacking the bone itself. No wonder the affected joint hurts with every movement and the pain continues to increase.

If this systematic damage is not halted the bone tissue changes shape and the joints (mostly the knees, back, hands and feet) become crooked and deformed. The earlier the damage can be contained the better.

BIOLOGICAL DRUGS act on a completely different level from other anti-inflammatories thanks to an active ingredient called etanercept.

Etanercept attacks one of the main arthritis culprits, a substance called TNF alpha. Although patients may never have side effects as a result of biologics, they will nevertheless be closely monitored every four to six months.

People with TB or other infections, heart failure, multiple sclerosis, hepatitis B or C, cancer or a history of cancer shouldn’t take these drugs.

BIOLOGICAL TREATMENT

Biological therapy is one of the wonder drugs developed in the past 20 years.

‘‘A child’s best chance of remission is when the disease is diagnosed and treated within the first six months,” explains Dr Ingrid Louw, a rheumatologist from Cape Town.

She says the introduction of biological drugs in the late ’90s set the standard for the treatment of juvenile arthritis in children whose symptoms cannot be fully controlled by methotrexate, the drug that is usually prescribed initially.

‘‘Enbrel is the only biological drug registered for children and the results have been astonishing,’’ says Dr Louw.

Enbrel is used for the treatment of conditions such as rheumatoid arthritis, ankylosing spondylitis and psoriatic arthritis.

When our body develops inflammation a dangerous substance called TNF alpha is produced. The active ingredient in Enbrel, known as etanercept, removes most of these TNF alpha molecules from the joints and blood.

The treatment can be successful in up to 50 per cent of cases if a biological drug is started within six months of the onset of the disease. The problem, however, is getting an early enough diagnosis.

In only a fraction of cases the results aren’t so good – such as when Lizzy had to use the biological drug for a second time.

While she was on her first course her symptoms cleared up and she even managed to complete a hike of 4 km.

But when she had chicken pox in August last year the arthritis returned – and this time Enbrel didn’t bring about such a dramatic improvement.

Some forms of juvenile arthritis are more difficult to control and in such cases it’s essential the treatment be followed for years – conscientiously and without interruption – in order to prevent any damage.

According to rheumatologists Lizzy’s case isn’t the norm.

SIDE EFFECTS AND COST

Not surprisingly doctors are cautious when it comes to prescribing drugs to children.

Parents’ concerns about the side effects of biological drugs are clear from discussions on internet chat rooms.

‘‘Some are very emotional about certain arthritis medications but this is unnecessary,’’ Dr Louw says.

It’s understandable that parents become anxious when they hear their child needs to take pills or undergo treatment for an extended time.

They then tend to look for advice and help wherever they can find it. Sometimes they consult the wrong sources – such as internet chat rooms where people can easily fuel other parents’ fears.

Parents need to keep in mind that it’s the illness that’s the problem, not the medication.

This is why a doctor with experience in the treatment of arthritis should handle the matter.

The drug Revellex, for example, was declared unsuitable for children after it caused cancer in a few isolated cases of children with inflammatory bowel disease.

In South Africa the use of biologics has been hampered by the cost but also by the unwillingness of medical aids to view biologics as essential treatment.

It certainly is expensive: a staggering R60 000 to R120 000 a year on average (between R5 000 and R10 000 a month), depending on the child’s weight.

Medical aids are often reluctant to pay.

‘‘It’s inexcusable that they don’t want to pay for this medicine,’’ Dr Louw says. ‘‘It’s no longer in the experimental phase.’’ Dr Louw, the Arthritis Foundation of South Africa and CHAT (Children Have Arthritis Too Trust) are campaigning to make the new biological drugs available to every child with arthritis in South Africa.

It’s hoped the availability of these drugs will improve in the near future so many more patients can enjoy the freedom in movement brought about by an improvement in their condition. But at the moment children from previously disadvantaged communities need to learn to live with pain if – as a result of various factors including living conditions – their arthritis is not controlled as effectively as it could be.

Take the example of Zizipho Maga who went to a state hospital for her treatment. She’s 11 and in Grade 4 at St Joseph’s Primary in Cape Town. She’s bright and hardworking and always up for a challenge – but she’s battling the aches and pains of an 80-year-old.

In Zizipho’s case her wrists, fingers, ankles and toes were initially affected with severe pain, swelling and stiffness which later spread to her knees as well. She’s currently doing well but the state can’t continue to supply her with these expensive drugs.

Many children with arthritis are never even diagnosed. ‘‘There’s a huge lack of awareness among the public and even doctors when it comes to juvenile arthritis,’’ Dr Louw says.

‘‘There are only five paediatric rheumatologists in South Africa and getting an accurate diagnosis quickly is really difficult, yet it’s vital. People often get the correct arthritis treatment too late. In adults delayed treatment merely results in more aches and pains and some deformity but for children any delay could be devastating and result in severe deformity.’’

Children who aren’t treated face a lifetime of disability and often end up as social outcasts because they’re smaller than other children and look different.

JUVENILE ARTHRITIS EASILY MISDIAGNOSED

Children’s adaptability may help to make their life easier but could also be an obstacle to early diagnosis.

Kids adapt quickly and effectively to adverse conditions, which may cause a delay in diagnosis, says Cape Town rheumatologist Dr Ingrid Louw. ‘‘So while they may start off complaining of a stiff knee they somehow manage the pain and their parents think the problem has disappeared. As a result they don’t get the appropriate medical help.’’

WATCH OUT FOR THESE SYMPTOMS

  • Juvenile arthritis is often dismissed as growing pains, a common occurrence that affects many children and peaks around the age of four or five. But growing pains occur at night and usually behind the knee or in the leg. Stiffness in the neck, hips or other joints can also occur.

  • Rashes may suddenly appear and disappear in different areas.

  • High fevers that spike in the evenings then disappear are characteristic of systemic juvenile arthritis.

  • Joints may suddenly swell and remain enlarged.

ATHRITIS IN ADULTS

Most arthritis sufferers are adults. It’s hard to pinpoint the number of sufferers in South Africa but it’s believed as much as one in 10 visits to a GP is arthritis-related.

The name arthritis refers to a group of more than 200 different diseases. Osteoarthritis, rheumatoid arthritis, gout and ankylosing spondylitis are the most common forms of arthritis among adults.

To date there’s no effective cure for OSTEOARTHRITIS but it can be effectively managed with non-steroidal anti-inflammatory medication and painkillers.

It’s possible to slow down RHEUMATOID ARTHRITIS with anti-inflammatory drugs including new biologics such as Enbrel, Revellex and Humira, all of which are available locally and prescribed extensively for adults.

The treatment of GOUT includes pain control as well as medication to prevent further crystal deposits in the joints (the cause of the illness).

Anti-inflammatories are beneficial for patients with ANKYLOSING SPONDYLITIS but spinal disease often requires the use of biologic agents that work extremely well in these cases.

TAKE CHARGE

While there’s no cure for arthritis managing the disease proactively is important. Here are some suggestions to help get you back into the swing of things.

  1. GET SOME REST: Exhaustion only worsens arthritis so listen to your body. Feeling tired is an important warning that you need to rest. Ongoing pain can often result in depression so take time to listen to your favourite music, sit and relax in the garden or spend time with friends. You need to find ways to rejuvenate your body, mind and spirit.

  2. GET MOVING: Exercise helps ease pain, increases the range of movement, reduces fatigue and boosts your mood. Your doctor or physiotherapist can recommend the exercises best suited to you but you may want to try yoga, t’ai chi, isometrics (where you create resistance by tightening a muscle without moving the joint) and stretching. Swimming in a heated pool is also a good option – the buoyancy helps reduce strain and the warm water eases stiff joints.

  3. WATCH YOUR WEIGHT: Carrying extra kilos puts more stress on your joints and may speed up the destructive course of arthritis.

  4. BE CREATIVE: Instead of battling with daily chores that leave you angry and frustrated find innovative ways around them. Use Velcro instead of buttons, swop your doorknobs for long handles and buy an electric toothbrush.

  5. ASK FOR HELP: Don’t let pride stop you from asking for help. Friends and family are probably more than willing to lend a hand.
Read: What is juvenile arthritis?
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