Belfast Telegraph

Sunday 21 September 2014

Children focus of arthritis trial

Arthritis sufferer Laura on her swing

Children in Northern Ireland who suffer from crippling arthritis are to be the focus of a major clinical trial which hopes to lead to better treatment for tens of thousands of children around the world.

The £500,000 programme is being carried out at Belfast's Musgrave Park Hospital and aims to recruit about 40 local youngsters aged between four and 18.

Consultant rheumatologist Dr Madeleine Rooney is leading the study which is aiming to reduce brittle bones (also known as osteopenia) in youngsters with arthritis.

Many children develop osteopenia as a result of taking steroids to treat their diseases.

The team hope their research will lead to new guidelines on the treatment of steroid-induced osteopenia, which could improve the lives of the tens of thousands of children with arthritis who are affected throughout the world.

The study, funded by the Arthritis Research Campaign, also hopes to involve a further 230 children and young people from throughout the UK. It is the first multi-centre trial involving children to be led from Northern Ireland.

More than 12,000 children and teenagers in the UK have childhood arthritis, known as juvenile idiopathic arthritis (JIV). Around 400 of them live in Northern Ireland.

Steroids are widely used in the treatment of childhood arthritis and other related conditions, such as lupus, juvenile dermatomyositis or vasculitis.

But the down side of these drugs is that they cause thinning of the bones. More than 50% of children who take steroids develop osteopenia within a year.

The placebo-controlled trial will compare the effectiveness of risedronate, a bisphosphonate drug which protects against bone loss, with 1-Alpha (a more potent form of Vitamin D) on the bone density of the children over a year.

Dr Rooney, who is also a senior lecturer at the Queen's University, said: " As a result of early onset arthritis, children develop growth abnormalities, joint damage and osteopenia.

"This means they are at greater risk of developing osteoporosis in later life and are at increased risk of fractures, particularly vertebral collapse.

"There are currently many studies showing the effectiveness of bisphosphonates in the treatment of osteoporosis in adults - including a significant reduction in fractures, and there are now clear guidelines on how it should be diagnosed and treated."

Dr Rooney said, however, there is no information available for its effectiveness among children.

"Although there are tens of thousands of children worldwide currently receiving steroids for chronic rheumatic diseases, there is no scientific basis for the prevention of steroid-induced osteopenia, nor any guidelines on how it should be treated," she said. "We hope that our trial will lead to the production of proper guidelines, and to better treatment for children with arthritis and other rheumatic diseases."

The three-year POPS (paediatric osteopenia) trial is funded by the medical research charity on behalf of the British Society of Paediatric and Adolescent Rheumatology and managed by Belfast Health and Social Care Trust.

Recruitment for the trial is ongoing. To find out more about the trial, contact co-ordinator Kerrie Charlton at kerrie.charlton@belfasttrust.hscni.net or 028 7778 1253.



'She battles on with no complaints'

Little Lauren Middleton was only beginning to take her first unsteady steps in life when her parents noticed something was wrong.

Around the time of her first birthday, the Co Londonderry toddler's mum and dad became concerned that she appeared to be limping and was starting to shuffle on her bottom instead of becoming more confident on her young feet.

Darrel and Sandra Middleton were left stunned when, after medical tests, their youngest child was diagnosed with arthritis at the age of 18 months.

"She just stopped walking and the pain was really bad," her mum recalled.

"She was only really able to shuffle. Her knees and legs were frozen in one position, Lauren couldn't straighten them out at all. We were absolutely shocked when it turned out to be arthritis."

Now aged six, Lauren is one of around 400 children in Northern Ireland who suffer from juvenile idiopathic arthritis (JIV), the form of the crippling condition which affects young people.

After her diagnosis, the Feeny child was referred to Musgrave Park Hospital in Belfast where she spent three weeks as an inpatient.

Her legs were weak and she was in a lot of pain, mostly in her legs, ankles, wrists and toes.

Lauren was initially treated with cortisone injections which her mum said " worked miracles" in helping her daughter's flexibility and inflamed joints.

Since then, regular physiotherapy and high doses of steroids have helped keep the condition relatively under control.

The steroids leave the P2 pupil at risk of developing thin bones - known as osteopenia - and she is currently waiting to undergo a scan to check her bone density.

Lauren is not one of the local children taking part in a major medical trial at Musgrave Park which is looking at the link between osteopenia and JIV.

The childhood arthritis has also affected young Lauren's eyesight by causing iritis, a common side-effect of the condition which causes inflammation of the eyes, and slight glaucoma.

Despite these complications, Lauren is a happy pupil at Cumber Claudy Primary School and participates fully in all class activities, including PE.

"There are times we know she is in pain but she just battles on and doesn't complain," her mum added.

"She enjoys school and can take part fully in everything. She just has to take a little bit easier. She can do PE but she will be sore and limping a bit the next day."

Mrs Middleton said she is concerned about the long-term effect of high doses of steroids on Lauren's health.

"She has been on high doses of steroids. Her doctors are hoping to gradually get her off the steroids but the arthritis flares up when the dosage is lowered. It's a matter of finding a balance. She is currently on lower doses and it seems to be working well."

Mrs Middleton said they do not know what the long-term prognosis for Lauren's condition is.

"She could grow out of it as quickly as it developed. It would be great if that did happen but we just don't know," she said.

What is juvenile idiopathic arthritis?

According to the Arthritis Research Campaign (arc), doctors use the term 'juvenile idiopathic arthritis' to mean arthritis which begins before a child is 16, causing one or more joints to be swollen, painful or stiff for more than six weeks.

It affects around one in every 1,000

children in the UK. It can begin at any age, although it most commonly shows up in younger children. And it is more common among boys than girls.

For the vast majority of children affected, arthritis is not the same as in adults. And having arthritis as a child does not mean it will last into adulthood.

Doctors do not know what causes it or why it happens in some children rather than others. Every child has a different illness and responds differently to treatment.

There is no cure for JIA but many children go into what doctors call 'remission', which means their symptoms disappear, often forever.

About three in five children will have few or no physical problems as adults. For the remaining youngsters, arthritis can unfortunately cause some longer-term problems. They may have some joint damage which limits daily activities by varying amounts, and could develop osteoporosis when older.

For further information, log on to www.arc.org.uk.

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