Q & A Overview
- LUPUS - STRANGE NAME FOR AN ILLNESS, ISN'T IT?
- Yes - it's the Latin word for wolf. Lupus vulgaris, a severe facial rash rarely seen now, was once thought to resemble a wolf's bite.
- SO WHAT IS LUPUS?
- It's an incurable immune system illness, probably genetic in origin and mainly suffered by females. It can affect any part of the body and that's the danger.
- AND WHAT IS THE DANGER?
- Lupus can produce many symptoms and family doctors often fail to recognise it. Meanwhile, a number of major organs can be damaged in an irreversible way.
- WHICH MAJOR ORGANS ARE LIABLE TO DAMAGE?
- Principally the kidneys and the skin, also the heart, lungs and brain.
- SO WHAT ARE THE SYMPTOMS TO LOOK OUT FOR?
- The two major symptoms are joint and muscle pain and an extreme tiredness that won't go away no matter how much you rest.
Rashes, depression, anaemia, feverishness, headaches, possible hair loss and mouth ulcers may all be part of the pattern of lupus.
Noticeably, whilst the two major symptoms are invariably present, people with lupus can differ greatly in their symptoms and how the illness can affect them - life-threatening for a few, very mild for some. Miscarriage, often recurrent, is another unhappy complication of lupus.
- THE SYMPTOMS - IS LUPUS CONFUSED WITH OTHER CONDITIONS?
- Yes - worldwide it's acknowledged as being more common than leukemia, muscular dystrophy and multiple sclerosis, and those conditions (and others) share a number of similar symptoms.
- CAN LUPUS BE PASSED ON BY DROPLETS OR TOUCH?
- No, lupus is neither infectious nor contagious.
- WOMEN ARE THE PRINCIPAL SUFFERERS?
- Yes - the main trigger of lupus is hormonal activity and change, and lupus can often trigger after childbirth, at the menopause or during puberty and usually between the ages of 15 and 55.
- THE GENETIC LINK - CAN THIS BE EXPLAINED FURTHER?
- A number of illnesses arise from a faulty immune system - two we know well are arthritis and rheumatism. Often the lupus patient has family members with these autoimmune conditions or others such as MS, thyroid problems, diabetes, Raynauds, scleroderma, Sjogrens and others.
- IS LUPUS A WORLDWIDE ILLNESS?
- Yes, and it's more common in black and Asian women than white women.
- BUT WHAT EXACTLY IS LUPUS?
- In lupus the immune system produces far too many antibodies which, circulating through the bloodstream, cause reactions leading to inflammatory processes anywhere in the body.
- WHAT ARE THE OTHER TRIGGERS OF LUPUS?
- A viral infection, strong medication, sunlight, trauma, around puberty, after childbirth and the menopause can all contribute. Environmental factors may also contribute in some way.
Any two or more of these can also combine to set off the illness.
- ARE THERE LUPUS BLOOD TESTS AND IS DIAGNOSIS EASY?
- The range of symptoms can mislead GPs but there are specific blood tests available.
The individual's medical history gives good indications to lupus specialists, usually rheumatologists. Other specialists who may treat lupus patients include renal experts, obstetricians, dermatologists and cardiologists.
On balance, diagnosis is not easy and it would help enormously if family doctors were able to be better informed about lupus..
- LUPUS PRODUCES SURPLUS ANTIBODIES - CAN THEY BE KILLED OFF OR IN SOME WAY SUPPRESSED?
- That's far from easy - the immune system is very complex and doctors are still trying to fully understand its workings. For the present, any one or more of a range of medications is prescribed to attempt to control the illness and to dampen down its effects.
- WHAT IS THE RANGE OF MEDICATIONS?
- Lupus is generally treated using Anti-Malarials (such as Hydroxychloroquine) and Non-steroidal anti-inflammatory drugs. Steroids such as prednisolone have been vital in the improvement in lupus care and in some cases are life saving. Immunosuppressants are widely used in more severe cases. The most commonly used are Azathioprine, Methotrexate and Cyclophosphamide.
- CAN PATIENTS 'SELF-MANAGE' THEIR LUPUS?
- Patients can certainly be positive in obtaining good information on lupus and in learning to 'pace' themselves - rest is very essential.
Being open with family and friends about the unpredictable pattern of lupus helps, and stress, depression and pain each need to be managed.
Avoiding direct sunlight always helps.
Seeking assistance at the right time from doctors or the family takes some resolve but is a 'must'.
- WHAT ABOUT THE LIFE EXPECTANCY OF LUPUS PATIENTS?
- This is now much improved and most patients can anticipate a normal lifespan. The advent some years ago of steroids has saved the lives of many lupus patients.
- WHAT ELSE SHOULD WE KNOW ABOUT LUPUS?
- There's far more undiagnosed lupus out there being 'put up with' and we have to increase awareness hugely if these people are to be diagnosed and then get some quality back into their lives. Lupus is usually 'for life' at present, having an ongoing impact upon the patient and also upon her or his parents, children, friends and colleagues.
- WITH MY LUPUS, CAN I USE THE PILL?
- A qualified yes - the majority of young women with lupus suffer no problems on the oral contraceptive pill. However, it is now recognized that those women with antiphospholipid antibodies are at increased risk of thrombosis or migraine when taking the pill. Perhaps surprisingly, hormone replacement therapy, often given to treat osteoporosis in post-menopausal lupus patients, is generally well tolerated with few side-effects.
- WHAT ABOUT THE NEXT TEN YEARS?
- Bold initiatives such as stem cell transplants are being experimented with, and the genetic background puzzle of lupus is gradually being uncovered. More significant developments are likely and new medications are gradually being introduced.
Medical knowledge increases all the time and there's no doubt that the lupus patient is having her/his illness under better control and management than ever before. Doctors are successfully tailoring medication now to individual patient need, and the future for the lupus patient looks ever more hopeful.
- IS THERE A STRONG MESSAGE FOR FAMILY DOCTORS?
- Emphatically yes! The many symptoms of lupus, differing from patient to patient, can easily cause the practitioner to lean towards a more comfortable or better-known ailment. Knowledge of the lupus condition is vitally needed for quick and accurate diagnosis that may prevent the onset of major organ damage.
IF YOU DON'T KNOW ABOUT IT - YOU DON'T DIAGNOSE IT......