Spotlight on... lupus
Chris Maker
LUPUS UK
Our latest ‘spotlight on...’ article, written by Chris Maker from the charity, LUPUS UK, highlights the different variations of lupus and the treatments for patients that are currently available.
Over five million people in the world have lupus, but what is lupus?
There are three different variations of lupus disease:
1. Systemic Lupus Erythematosus: SLE is a chronic disease which affects one or many tissues of the body: skin, joints, muscles, blood vessels, blood cells, brain and nerves, internal organs, such as lungs, heart, kidneys, gastrointestinal tract and / or the linings around internal organs. Inflammatory and immune responses account for many of the symptoms observed in systemic lupus.
Figure 1: LUPUS UK’s poster highlights the facts – Lupus can affect anyone, any organ, anywhere in the world.
2. Discoid Lupus (DLE): in general DLE is a benign disease, which rarely affects the internal organs, i.e. rarely becomes systemic. Most studies suggest that approximately 5% of patients with discoid lupus at some stage may suffer a generalised flare of the disease, involving joints, kidneys etc. and may progress to developing Systemic Lupus Erythematosus.
3. Drug-induced Lupus (DILE): occurring during the administration of certain drugs in susceptible individuals.
What do we mean by inflammatory?
Inflammation, in simple terms, is a reaction by the body to tissue injury, an attempt to “contain the damage” and carry off debris. Outward signs are warmth, swelling, redness, excess of local fluid and pain. In SLE the body’s own immune system is producing antibodies, which attack the body itself causing tissue injury.
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"About 40% of those with the illness are likely to have some form of kidney involvement."
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Lupus can vary from person to person and in our 5500 members we see lupus where it hardly has any effect and lupus where it kills. About 40% of those with the illness are likely to have some form of kidney involvement. Patients also run the risk of other damage to the body, some of which is likely to be permanent. The vast majority of lupus patients suffer with extreme tiredness and disabling muscle and joint pain, and these symptoms may vary from severe, to fleeting or persistent and can form a vicious circle. Around 60% of people with lupus are likely to be light sensitive to some degree, with many having to avoid the sun and a minority who cannot even venture out in daylight. Approximately 90% of people with lupus are female, mainly between the ages of 15 and 55.
There is not a more difficult disease to diagnose than lupus, as it often mimics other conditions. The diagnosis will consist of a review of the patient’s symptoms, a detailed physical examination, a battery of tests, the ruling out of other disease and additionally time is sometimes necessary to observe the course of the disease. Some patients have had to wait a number of years before obtaining a lupus diagnosis. The diagnosed patient is often prescribed strong medication, which may have to be taken for many years. Some medications, such as steroids, can have serious long term side effects, such as osteoporosis. Lupus is neither infectious nor contagious.
How does lupus affect the body?
Lupus is a highly variable disease. Potentially, it can affect every organ and tissue of the body. In any individual patient, however, only some of these may ever be affected, the tissues and systems involved may change and the intensity of involvement may vary with time. The disease is very much an individual illness differing from person to person.
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"There is not a more difficult disease to diagnose than lupus, as it often mimics other conditions."
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Early symptoms can be very non-specific and often likened to viral illness: fever, fatigue, poor appetite, weight loss, aching in joints and muscles, sores in the mouth, swollen lymph nodes, nausea and vomiting, colour changes of the fingers on cold exposure and rashes. The most characteristic rash is a red flush on the cheeks, extending across the bridge of the nose (butterfly rash), but other rashes occur including discoid and photosensitive rashes (occurring after exposure to ultraviolet light). Recurrent miscarriage can be an early pointer to lupus.
What treatments are available for patients with lupus?
• Non-steroidals, Asprin etc… – anti-inflammatory drugs (NSAIDS), used for patients who suffer mainly from joint and / or muscle pain. Asprin, Heparin or Warfarin may be prescribed for patients needing anticoagulation treatment.
• Anti-malarials – these are prescribed for patients with joint and skin involvement and may be sufficient for those with moderately active lupus. Hydroxychloroquine and Mepacrine are most commonly used.
• Steroids – such as Prednisolone, have been vital in the improvement in lupus care and in some cases are life saving. They can suppress active disease and have a profound effect on inflammation.
• Immunosuppressants – these are widely used in severe disease. Azathioprine, Methotrexate and Cyclophosphamide are most commonly used.
Patients are usually only kept on high impact medication for as short a period as possible.
How can pharma better support lupus patients?
At present there is no cure for lupus, but with careful monitoring of the disease and treatment, most patients are able to live a normal life span. The majority of lupus patients will be taking medication, often in multiples, throughout their lives, and the side effects of these drugs can be significant. A medical helpline service for the lupus patient concerned about side effects would be very useful. Research into medications, which do not have the major side effects often experienced by patients, as well as raising awareness within the medical profession to ensure early diagnosis of the disease, would be beneficial to all lupus patients, and above all finding a cure for lupus.
As a small charity, LUPUS UK is able to fund research grants to the sum of £250,000 - £300,000 each year, this is just a drop in the ocean. Far more research and funding are needed to make a difference to the lives of lupus patients worldwide.
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About the author:
Chris Maker is the Director at LUPUS UK, the national registered charity supporting people with systemic lupus and discoid lupus and assisting those as they approach diagnosis.
At present, the charity has over 5,500 members and 20 Regional Groups, who arrange medical talks, publish local newsletters, set up social occasions and organise fundraising events. LUPUS UK also produces an informative national magazine, News &, Views, with lupus articles, letters, reports and photographs, and operates a strong grant programme for research and welfare purposes.
Help is also available from LUPUS UK through membership of the charity. Through membership the patient can obtain advice that will help towards diagnosis, a comprehensive patient pack, regular mailing of News &, Views magazine, diagnosis criteria and comment, access to National Contacts who are mostly lupus patients, books and leaflets, membership of local groups and advice on many aspects of lupus management. Whether a lupus patient, family member or friend of someone with lupus, the charity welcome your membership.
How can we increase awareness of lupus within the medical profession?
