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A wonder drug beat my teenage arthritis

11th April 2007

UK Daily Mail

At 15 Kate was bedridden and in crippling pain. Now she's about to walk down the aisle. So why is the drug that rescued her denied to so many others?

At first doctors told Kate Oakes the tightness in her joints was growing pains. It was October 1999 and she had just returned to school after the summer for her GCSE year.

No one could have imagined within a few weeks she would go from being an active 15-year-old who enjoyed cross-country running and netball, to being bedridden, in almost constant agony, unable even to hold a pen.

"It happened so suddenly," says Kate, from Pelsall in the West Midlands. "One day I was fine, the next my elbows were so painful I couldn't straighten my arms and they were stuck at right angles. It felt as if all my joints were trapped in a burning hot vice.

"Within a week my knees had swollen to twice their normal size, and the pain was so intense I could barely stand for a few seconds without bursting into tears. My fingers were so stiff that my hands were permanently in fists."

After a month Kate's parents took her to be examined by a rheumatologist. Blood tests confirmed Kate was suffering from severe rheumatoid arthritis in every joint in her body.

The condition, in which the body's immune system attacks the tissues that line the joints - known as the synovium - causing inflammation and pain, typically begins in early adulthood or middle age. However, it is increasingly seen in teenagers and children.

It affects between 0.5 per cent and 1 per cent of the population and is characterised by painful periods known as flare-ups. If left untreated, the cartilage, ligaments and bones can be irreversibly damaged.

Despite beginning drug treatment immediately, over the following years Kate's condition became so severe that she was often confined to a wheelchair.

So it is nothing short of remarkable that today, aged 23, she is studying for a university degree and is planning to walk down the aisle in June. Perhaps most importantly, she is relatively pain-free.

This turnaround is largely thanks to anti-TNF therapy, a revolutionary family of drug treatments, introduced in 2000, that has drastically changed the lives of rheumatoid arthritis sufferers worldwide.

Anti-TNF treatments have proved effective in the 10per cent of patients who fail to respond to standard therapies, namely non-steroidal anti-inflammatory drugs such as aspirin and ibuprofen, and disease modifying anti rheumatic drugs for more severe cases, which work by suppressing the immune system.

The most common disease modifying antirheumatic drug is methotrexate.

Anti-TNFs have been shown to reduce damage of the disease and in some cases put the patient into remission. Studies have found around threequarters of patients who do not respond to disease modifying anti rheumatic drugs respond well to anti-TNF therapy.

The drugs work by 'switching off' a chemical enzyme called tumour necrosis factor, which plays an important role in causing inflammation and tissue damage in rheumatoid arthritis sufferers.

Yet despite their undoubted effectiveness, the National Institute for Health and Clinical Excellence recently made recommendations to limit prescribing drastically - a move vehemently opposed by doctors, charities and patient groups.

The treatment is available to patients who have tried two or more disease modifying antirheumatic drugs, and found them ineffective. NICE proposes to stop patients from switching between anti-TNF drugs. If one doesn't work, they won't be allowed to try another.

This matters because around half of patients switch before finding one that works. There are three different anti-TNF drugs on the market at present: Enbrel (etanercept), Humira (adalimumab) and Remicade (infliximab), delivered either by injection or drip.

After diagnosis, Kate was started on methotrexate and sulfasalazine. The treatment initially worked, but over the next three years it lost effectiveness, and her symptoms returned worse than ever.

Kate was the perfect candidate for anti-TNF treatment, which she began in 2002. She tried two types before finding a third, Humira, which worked. Kate sees a nurse for an injectionof the drug once a fortnight, which has effectively halted the progression of her disease.

She says: "Thanks to the anti-TNF I've been able to get on with my life. Some days, I feel completely normal. Other days there is pain, but I'm used to it and I have far fewer flare-ups."

Kate lives with her father Graham, 53, and mother June, 50. Last year, she began an Open University course in English, and in June she will marry her boyfriend Sean Dennis, 28.

"It makes me so angry to think that people like me might be denied treatment that could change their lives," says Kate.

Consultant rheumatologist Professor David Scott, at Norfolk & Norwich University Hospital, believes the decision is primarily an economic one.

Anti-TNFs cost the NHS around £10,000 per patient, per year. "This therapy has been one of the major advances in treatment of arthritis in the past 60 years," he says.

"Rheumatoid arthritis patients who are allowed to deteriorate will cost the NHS more in the long run."

Kate is looking forward to a full life thanks to anti-TNF therapy. Only NICE can decide whether thousands of others will be given the same chance.

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