Deadly "chameleon" disease that GPs often fail to spot...
Lack of early diagnosis of Lupus can lead to disability and kidney failure, says Arthritis Research Campaign report.
A significant number of Britain's GPs are failing to diagnose a rheumatic disease which attacks between 20 and 30,000 people in the UK, says a report published today by the Arthritis Research Campaign (ARC).
The little-known disease Lupus can cause kidney failure, destroy joints, and lead to frequent miscarriage. Nine out of ten sufferers are women, usually of child-bearing age.
The medical research charity is so concerned that it is launching a campaign to make GPs more aware of the disease and its symptoms during its Arthritis Research Week (June 2-8.)
Misdiagnosis of the condition happens frequently, preventing early treatment and management of the disease - two factors which are both essential for the patient's survival and quality of life, said the ARC, aimed at highlighting the strides being made into in Lupus research and treatment, to raise awareness of the disease.
"The main reason why so many GPs fail to spot Lupus is because of the chameleon-like nature of the disease, and its ability to mimic other diseases," said Professor David Isenberg, ARC Diamond Jubilee Professor of Rheumatology at University College, London.
"The factors which underlie lupus are very similar to those which underlie other autoimmune diseases such as diabetes and multiple sclerosis. The disease can also mimic schizophrenia, although this is rare. A significant number of GPs fail to diagnose Lupus correctly and many patients are sent to see rheumatologists because doctors think they've got arthritis. The disease is difficult to diagnose correctly in the early stages unless the doctor remembers and thinks of it."
Jennifer Tarelli's Lupus mimicked schizophrenia to such an extent she thought she was going mad. Now aged 50, Mrs Tarelli, from St Albans, who developed Lupus after the birth of her fourth child 15 years ago, started hearing voices and seeing non-existent objects.
When the voices grew more frightening; told her to step under a train, drive her car into tree, and harm her children, she sought the advice of her specialist, who diagnosed cerebral Lupus, and took her off high dose steroids.Today, she holds down a part-time lecturing job, and despite her illness, leads a full life.
According to another leading Lupus expert, Dr Graham Hughes, head of the Lupus Research Unit at St Thomas's Hospital in London, patients can look forward to a far greater quality of life than 20-odd years ago because fewer doctors were now misdiagnosing the disease.
"The disease is common, for example at our Lupus clinic at St Thomas's, we have more than 2,000 patients on our register,"said Dr Hughes. But, he added, despite the advances of the past decade, Britain had been slow to recognise Lupus as a rheumatic disease compared to the US, and other European countries. Although worldwide Lupus is more common than multiple sclerosis or leukaemia, few people have even heard of it.
"The vast majority of people with Lupus are seen by rheumatologists, and the once the disease has been detected, it can be managed through treatment, before irreparable damage has been done," he added.
Lupus is an incurable disease of the immune system, which is caused when the body's defence mechanism goes into overdrive and starts to attack itself. ARC is funding several research projects to the tune of several million pounds in leading centres in London, Sheffield and Birmingham which are trying to establish the antibody structure of the disease, and its underlying genetic components.
"From the research point of view, major advances are being made in understanding the immunology and molecular biology of the antibodies associated with Lupus," said Prof Isenberg.
Symptoms range from joint and muscle pain, heart problems, ulcers, fever, rashes, frequent miscarriage. Afro-Caribbean and Asian women are much more susceptible to contracting Lupus than white women.Thirty per cent of patients will develop kidney disease. Sufferers go through "flare-ups" when the disease starts to attack their organs, then periods of respite.
Lupus has to be carefully managed. Treatments are far more successful then they were 20 years ago, when high dose steroids were mainly prescribed, often with serious side effects such as thinning of the bones (osteoporosis).
Today, low dose steroids continue to be used, as well as anti-malarial drugs, immuno suppressants, and the use of low dose Cyclophosphamide for patients with kidney disease.
Better tailoring of existing drugs was a factor for the improvements in treatment, although Lupus remained a disease of considerable mortality, said Prof Isenberg. Out of 200 of his patients followed up over 15 years, 24 had died. The average age at the time of death was 43.
"A significant reason for the improvement of life expectancy has been the success of dialysis and transplants for patients with kidney failure,"added Prof Isenberg.
"We are using the same drugs, such as steroids, as we did 20 or 30 years ago, but we know use them more judiciously. These days the most common cause of death is probably infection as a consequence of having been over-treated with immuno suppressives."
"But there is no doubt that the earlier it is treated, the better the prognosis. Which is why it is so important that it is diagnosed correctly."
