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‘A glass of milk left me in a wheelchair’

It’s a debilitating condition affecting around 170,000 in the UK, yet ankylosing spondylitis (AS) is a little-known illness that takes around six years to diagnose. AS patient Juliette Leach, 41, from Hampshire, describes how lack of information led to frightening complications - and how a new drug is bringing hope for sufferers

By Madeleine Bailey - Daily Express 

As a child Juliette loved to play tennis, swim and go hill climbing, but one day, aged 11, she felt a severe pain in her buttocks.

‘It came out of the blue and I was puzzled because I hadn’t hurt myself. It was so bad I couldn’t do games at school but then after a few days it just cleared up,’ she remembers. ‘Then after that it would come and go for no apparent reason – and no one knew the cause. Eventually my GP referred me to a consultant rheumatologist who took an x-ray, said my joints were still developing and put it down to growing pains.’

But the pains didn’t go and Juliette was still suffering regularly at 19 when she was in her first year of training to be a physiotherapist.

‘Like most sufferers, I got used to the pain,’ she says. ‘Then I was picked out in class to help demonstrate how to assess a patient. The tutor asked me lots of questions, including where the pain was, whether I felt stiff in the morning and whether or not it was better after exercise or rest. She then referred me to a rheumatologist who took x-rays and did blood tests. I tested positive for the gene marker that indicates a susceptibility to ankylosing spondylitis (AS) and that, along with the x-ray results and my symptoms, confirmed I had the condition.’

However, like 83 per cent of people who are diagnosed with AS, Juliette had never heard of the progressive rheumatic illness, which affects around one in 350 people in the UK and the pain is caused by inflammation at the points where ligaments or tendons attach to the bone. Eventually the affected ligaments or tendons may turn into bone so movement becomes painful and restricted, and in the spine it can actually cause the vertebrae to fuse together.

Typical symptoms include slow onset of back pain over weeks or months, early-morning stiffness or pain, feeling better after exercise and worse after rest, tiredness and feverishness. It can even affect other joints such as the knees, hips and ankles.

Worryingly Juliette’s delayed diagnosis still isn’t unusual. Dr Andrew Keat, consultant rheumatologist at Northwick Park Hospital, explains, ‘It’s partly due to GPs’ lack of awareness, but also because symptoms may be present for years before anything shows up on an x-ray. As a result drug treatment is much less effective because the disease has become more advanced. Also, it’s vital that patients stay as active as possible to slow down progression but when the pain isn’t controlled, that doesn’t happen.’

Fergus Rogers, director of charity the National Ankylosing Spondylitis Society (NASS) feels that poor communication by medical profession is a major problem. ‘When patients come to us after diagnosis, more often than not it turns out that they haven’t been given the information they desperately need to help them deal with the condition.’

This was only too true for Juliette. ‘I was given anti-inflammatories but was told very little and learnt most of it from library books with scary pictures of bent-up people. The drugs helped me to stay active and after qualifying as a physio I emigrated to New Zealand, where I lived for three years.

‘One day I drank unpasteurised milk.  The next day I was laid flat out with a swollen left ankle, swollen right knee and a cloudy, sore left eye. On top of that I had terrible diarrhoea, stomach cramps and sickness. The doctors didn’t have a clue and I had to wait three weeks for my brother to bring me back to the UK.

‘Doctors here told me I’d caught campylobacter from the milk but no one had ever explained to me that food poisoning should be avoided at all costs as it can trigger severe reactions. The inflammation in the  eye (called uveitis) could have resulted in blindness. It didn’t but my sight in my left eye has now been permanently damaged. I spent the next six months in a wheelchair and the next three years on crutches. Had I been given antibiotics for the stomach bug and steroids for the uveitis, the consequences may not have been so bad - but if I’d have known the risk I wouldn’t have gone anywhere near the milk in the first place. For a while I sank into depression as I could no longer do my job, which I loved – in fact I could barely get up the stairs.’

Juliette gradually fought her way back into part-time work, training to be a rheumatology practitioner, but two years later as a result of the infection, she developed Crohn’s, a painful, inflammatory bowel disease.

A combination of two disease-modifying drugs, methotrexate and sulphasalazine, helped to damp down the inflammation and in 1998 Juliette married Nick, 41, a solicitor, and in 2000 they decided to try to start a family.

‘This meant I had to stop taking methotrexate, which can cause birth deformities. When I stopped I was in a lot of pain but it was all worth it when I eventually conceived and our daughter Emma was born in 2003. Strangely enough, the AS went into remission and I didn’t have much pain during pregnancy but a few months after the birth it returned with a vengeance and now I wouldn’t be able to function without methotrexate,’ says Juliette whose symptoms are back under control.

‘I swim twice a week and do yoga, and I now feel well enough to get back into work as a rheumatology practitioner soon,’ she adds.

But what brings hope for Juliette – and all AS sufferers - is the recent licensing of a new generation of biologic drugs known as anti-TNFs, which target the protein that causes inflammation.
‘This is the most exciting development to date,’ says Dr Andrew Keat. ‘Ordinary anti-inflammatories only have a moderate effect. They make it possible for patients to be more mobile but in trials the anti-TNFs have be shown to have significant benefits for 80 per cent of patients, including a strong feelgood factor. AS patients constantly battle with tiredness and feverishness but this totally disappears with these drugs, meaning they can have a normal life without effort.’ 

However, although the Scottish Medicines Consortium has just issued guidance for the anti-TNF drug Enbrel (etanercept), these drugs aren’t up for approval by NICE (the National Institute of Clinical Excellence) until February 2007, meaning that AS sufferers in the UK have a long wait.

Some people with a severe condition may be lucky enough to get access but according to Fergus Rogers they’re few and far between. ‘The drugs cost around £10,000 per person per year, which isn’t cheap, so at the moment consultants are struggling to get primary care trusts to provide funding, even for the most severe cases. But this is counterproductive. People on trials who were unable to work for years tried these drugs and went back into full-time employment. This means they stopped claiming state benefits and were able to pay their taxes, plus their quality of life – and that of their family - was vastly improved. Making these drugs more available makes sense on economic as well as compassion grounds, and NASS is lobbying to bring the review date forward.’

But it’s the condition’s low profile that’s the underlying problem. ‘If diagnosis didn’t take an average of six years, fewer sufferers would be in need the strongest, most expensive drugs in the first place. There needs to be more general awareness among GPs as well as the general population,’ says Fergus Rogers.

• For more information on AS, log on to the NASS website on www.nass.co.uk.

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