Research on trial - psoriatic arthritis
Published on 01 April 2010
James Butler and Lorraine Smith, both diagnosed with psoriatic arthritis in the past 12 months, are getting real Rolls-Royce care.
James, a student, aged 20, and Lorraine, who is 46 and a mother of five, are being seen by an experienced rheumatologist every month. Their drug treatment is escalated quickly if their condition is not improving, and their progress monitored via the very latest imaging techniques.
James and Lorraine are just two of 200 patients with psoriatic arthritis in Yorkshire taking part in a new half a million pound clinical trial being run at Chapel Allerton Hospital in Leeds, funded by Arthritis Research UK, which could make a huge difference to the way people with the condition are treated.
Psoriatic arthritis affects the joints and the skin, causing joint pain and swelling, leading to joint damage and disability over time. Although better drugs are now more available than in the past, doctors in Leeds believe that earlier, intensive treatment of the condition could reduce joint damage more effectively, preventing disability.
Now a team led by consultant rheumatologists Dr Philip Helliwell and Dr Laura Coates (who is also an Arthritis Research UK clinical research fellow) have set up a trial that compares intensive early treatment carried out in specialist clinics with the kind of care that patients usually receive, to find out which group of patients does better over a year. Their progress and response to treatment will be measured by sophisticated imaging techniques; ultrasound and magnetic resonance imaging (MRI).
“Tighter, more aggressive treatment... will result in a good outcome.”
Recruitment is already well under way in Leeds, while patients at St Luke’s Hospital in Bradford and York Hospital are now being recruited.
“We think that a tighter, more aggressive treatment of psoriatic arthritis, in which patients are given escalating dosages of drugs if their condition is not responding, and see a specialist every month with the aim of controlling their symptoms fully and as soon as possible, will result in a good outcome after 12 months,” explained Dr Helliwell, senior clinical lecturer at the University of Leeds. “The standard treatment is to see a specialist maybe every three months or so, with less emphasis on early, escalating treatment and a more waitand- see approach.”
There are already signs that the more intensive approach is working, at least in terms of patient and doctor satisfaction.
“Patients like the feeling that they are treated in a positive manner.”
“We have found so far that patients like coming back to the clinic every month, even if they are working, because they like the feeling that their disease is being responded to and that they are being treated in a positive manner,” added Dr Helliwell. “We normally can’t see them every month because we don’t have the time, so as doctors we like it too.”
James Butler and Lorraine Smith are certainly delighted with the high level of care and attention they have received thus far. About a year ago, James, a student at Leeds University studying electronics and nano-technology, went from being completely fit to being incredibly stiff in his joints in the space of a week. Fortunately his GP referred him quickly to Arthritis Research UK Professor Paul Emery’s clinic at Chapel Allerton, and when offered the chance of either standard NHS care or the chance to take part in the Arthritis Research UK trial, he chose the latter.
“It’s so much better to be seen every month rather than every three or four months.”
“The first few months were awful because it took a few weeks for the methotrexate to kick in, and it affected my studies – I couldn’t always make it in to lectures because of morning stiffness,” he says. “The methotrexate made me dizzy and gave me a bad head and stomach for 48 hours but that has subsided, and I’d say the benefits outweigh the costs because it is now controlling my symptoms.”
So far James has not needed to have his drugs changed or escalated, but knows that if he needs it, the response will be rapid. “It’s so much better to be seen every month rather than every three or four months, and to have access to MRI and ultra-sound and x-rays regularly which keeps tabs on my condition, so I’ve got a really good deal,” he says.
Lorraine Smith’s experience has been very different. She developed psoriatic arthritis in April last year, chiefly affecting her feet, and at the base of her spine. The pain in her feet and toes was so extreme that for a time she could hardly walk, nor even bear the weight of the duvet on her feet. Because she was on the trial, with its emphasis on regular attendance at clinic and escalation of drug therapies to induce a rapid response to treatment, Lorraine was swiftly put on the anti-TNF therapy etanercept once it became clear that methotrexate and sulfasalazine had failed to have any effect. As a result, she says, she feels a great deal better.
A former care home worker and volunteer in the Arthritis Research UK charity shop in Headingley, Lorraine says the care she has received while on the trial has been “fantastic.”
“I’m happy to be in a research project that might help others and l’m already really benefiting myself,” she added.
"Psoriatic arthritis is the ‘country cousin’ to rheumatoid arthritis"
Philip Helliwell, who is a leading expert in psoriatic research and treatment, believes that for years the condition has been regarded as the ‘country cousin’ to rheumatoid arthritis.
“Studies have shown that patients may not have as much joint damage as patients with rheumatoid arthritis but their levels of disability and quality of life is just the same, and they also have skin problems and spine involvement,” says Dr Helliwell. “There is the possibility that this trial may lead to a greater financial burden to the NHS as we might end up getting patients on expensive anti-TNF drugs more quickly than in conventional practice,” he adds. “However, we’re also doing a cost benefit analysis, and the wider picture may well show that this way of treating patients gets people back to work and off benefits, so has its own advantages. So far, anyway, most of our patients have remained on methotrexate, which is cheap as chips.”
Standard clinical practice around the UK in the future
If the trial proves that tighter control of psoriatic arthritis is effective, it may be adopted into standard clinical practice around the UK in the future. Unfortunately for patients on the trial, when it comes to an end after 12 months, so does the Rolls Royce service, and it will be back to the usual NHS care. Happily by then most of them will be in remission.
Look out for more details of other new clinical trials in future editions of Arthritis Today.
For more information on psoriatic arthritis you can read our new booklet online (PDF version): Psoriatic arthritis
Alternatively please call 0300 790 0400 or email us at firstname.lastname@example.org for a free paper version