By Juliet Rix
LONDON, England (Daily Mail), November 7, 2007:
When Debbie Grice left the Royal College of Art, she had three London galleries interested in her work. Such was the demand, she'd sold all the pictures at her graduation show, so that she returned to her native Yorkshire full of enthusiasm to build up a new portfolio.
'It was going to be the idyllic artist's life, living on my own, brooding over hilltops and painting,' she says.
But ten years on, the galleries still haven't received any paintings and Debbie is registered disabled. Within months of graduating, at the age of 26, she couldn't pull the duvet over her shoulder, let alone paint. In fact, unable even to lift a saucepan, she had to move back in with her parents.
Rheumatoid arthritis waxes and wanes, with relatively pain-free periods punctuated by agonising and disabling flare-ups Debbie is one of 390,000 Britons with rheumatoid arthritis - a potentially crippling autoimmune disease in which the body attacks itself, particularly in the joints, causing painful and damaging inflammation.
The peak age for onset of the disease is the early 70s, but there are thousands of younger sufferers, too.
The causes are unknown, although there seems to be a genetic predisposition. The disease waxes and wanes, with relatively pain-free periods punctuated by agonising and disabling flare-ups.
This week Debbie appears in a television programme on rheumatoid arthritis, in which she learns about the latest research and treatment - and more importantly, that if you want the best treatment, you have to be well informed and then fight for it.
That assertiveness needs to start immediately - making sure your GP takes you seriously can be difficult, as Debbie's experience proved.
She was 17 when symptoms first appeared. Yet despite extreme fatigue and joint pain that was so bad she couldn't walk for weeks at a time, she was not referred to a specialist.
Finally, after nine years of this, 'with my fingers bright red and sausage-like', her new GP sent her to a rheumatologist.
Getting an appointment wasn't quick - according to the National Rheumatoid Arthritis Society, the UK has half the number of rheumatologists it needs. When Debbie saw the consultant, 'he said: "You've got rheumatoid arthritis - it's obvious. How long have you been like this?"'
Such late diagnosis is unfortunately common, says Dr Andrew Bamji, president of the British Society for Rheumatology. It means that by the time treatment begins, there may already have been irreversible joint damage.
Even once a specialist is involved, treatment may not be ideal. The latest research suggests patients need aggressive treatment from early on, using higher doses of more powerful drugs than previously advised.
But this hasn't got through to all specialists yet, says Dr Bamji: 'Some are still using antique treatments.' Debbie was started on relatively low doses of less powerful drugs.
When these didn't work she was given Methotrexate, now recommended as the first line of defence against the disease.
Debbie's condition was so improved she went travelling for seven months. But flare-ups continued and she was regularly bedridden. Back in the UK, three years after diagnosis, she remembers: 'I was one big red berry of inflammation, laid in a hospital bed on a steroid drip, when this smart woman in a suit arrived.'
She was one of the first specialist rheumatology nurses, trained in the use of a new set of drugs called anti-TNFs.
These work by blocking a normally useful immune system chemical (TNF) that is vastly overproduced in people with the condition. It took a year for Debbie to qualify for these.
When she started treatment, she says, 'it was fantastic. For about four months I felt like Superwoman.' Or rather, a normal 30-year-old.
Anti-TNFs significantly improve the condition of about 60 per cent of sufferers who receive them and, if used early in the disease, can put about half those treated into remission.
But getting anti-TNFs is another struggle. The National Institute for Clinical Excellence (NICE) does not allow early use of anti-TNFs - patients must have tried at least two of the conventional drugs first.
Only the worst five to ten per cent of sufferers currently qualify, says Dr Chris Deighton, consultant rheumatologist and the British Society for Rheumatology's chairman of clinical affairs. He says specialists would like to have more flexibility in their use.
The problem is money: Methotrexate costs less than £200 a year, while anti-TNFs cost £8,000-£10,000. However, rheumatologists point out that after factoring in the cost of benefits and loss of tax revenue when a person is unable to work, the anti-TNFs look like great value for money.
NICE does not allow a patient to switch from one of these new drugs to another if the first one does not help - although this is allowed in Scotland.
Specialists find this frustrating because there is evidence that a patient not helped by one may still be helped by another. Rheumatologists have appealed against this decision and NICE has agreed to reconsider.
But as one expert put it: 'NICE is as slow as a slug on valium.' In the meantime, patients are being denied a treatment that might make a huge difference to their lives.
In Debbie's case it wasn't treatment she had to fight for, but for her other symptoms to be considered. During the making of the film, she was also diagnosed with symptoms of multiple sclerosis.
She'd mentioned these - pins and needles, slurring her words, momentary black-outs to doctors but had not been taken seriously (it is known anti-TNFs can exacerbate such symptoms).
Nor had they acted about the pain in Debbie's feet. 'I have often told the doctors my feet hurt, but nobody has ever asked me to take my shoes off,' she says.
This is appalling, says Dr Deighton, as almost all long-term sufferers have trouble with their feet; patients should be offered shaped insoles or special shoes that can make walking more comfortable and less damaging.
'I've always tried to give the consultant a pleasant time in my ten-minute appointments,' says Debbie. 'You don't want a black mark against your name. In future I am going to be more assertive and fight my corner.'
But the real fight will begin when Debbie tries to get access to a new immune suppressant, Rituximab - approved by NICE only in the past few weeks. This drug kills cells, the precursors of cells that create antibodies. It's a completely different mechanism from any other rheumatoid arthritis drugs.
In the meantime, she takes cocktail of a dozen conventional medicines (painkillers, antiinflammatories, steroids and immune suppressants) to control the side-effects of other pills. She also watches her diet - avoiding red wine, tomatoes, citrus fruit and cow's milk - as it can make a significant difference.
She has ordered a wheelchair, an uncomfortable admission of what may be to come.
Treatment has improved dramatically in recent years, and experts say the majority of those newly diagnosed should be able to look forward to normal life.
Even now, the outlook is much brighter than it was for Debbie, - especially, she says, sufferers arm themselves with knowledge and assert their needs. 'You have to believe you are worth the best treatment,' she says.
©2007 Associated Newspapers Ltd
