Health Topic: Lupus
The following information has been reproduced with the kind permission of the St. Thomas' Lupus Trust
- What is lupus?
- Signs & symptoms
- How is it treated?
- How is lupus diagnosed and monitored?
- What is the cause?
- Local support services
- National support services
Lupus is now recognised as an important and common illness of modern times. It is a disease in which the immune system goes ‘wrong’, becomes overactive. It can affect any organ of the body. Because the symptoms can be so diverse, including for example; fatigue, rashes, allergies, depression and kidney failure it is called the ‘great mimic’.
All ages can be affected, but the commonest sufferers are young females, the peak ages being between 18 and 45.
The most common feature of lupus is fatigue. It is a major symptom in some patients, and can be extremely distressing. The cause of this fatigue is still poorly understood, but generally, energy levels seem to improve once the disease is brought under control.
These can affect any part of the body, the most well-known being the so called “butterfly rash” over the cheeks and the bridge of the nose. In many patients the rash is made worse by exposure to ultra-violet light e.g. sunlight.
Hair loss is an important feature of lupus and is often the first sign of a disease flare. In the majority of patients the hair grows back totally once the disease is brought under control.
Joint Aches and Pains:
Flu like symptoms are common in lupus patients and are a major feature of the disease. Sometimes joint pains can be severe, mimicking early rheumatoid arthritis but normally the joints are not damaged and this clearly differentiates lupus from rheumatoid arthritis.
Dry (scratchy) eyes:
Many patients with lupus also have “Sjögren’s syndrome” with poor tear secretion. This results in irritation of the eyes and in some patients quite marked dryness. This is usually helped by artificial tears (e.g. hypromellose eye-drops).
Inflammation of Tissues covering internal organs:
The thin “sausage-skin” covering internal organs such as the heart (pericardium) and lungs (pleura) can be inflamed leading to painful symptoms such as pleurisy.
This is a major feature of lupus and very common indeed. It often requires both treatment of the lupus itself as well as the depression.
The kidney is the “silent” organ and often patients do not know that the kidney is involved; it is common practice in our unit to teach patients to test their own urine (using “dip sticks” or “albustix sticks”). Urine testing is essential in lupus patients for the early detection of kidney involvement, for which treatment must be prompt.
Treatment aims to suppress the overactive immune system and diminish inflammation. Treatment may be aggressive (e.g. steroids), but milder drugs are also widely used (e.g. antimalarials). With time the aim is to reduce drugs and ultimately discontinue their use. Patients may experience a fluctuating course of lupus, but most patients do get better and in the long term, aggressive treatment may not be needed.
Generally drugs used in the treatment of lupus fall into 4 groups:
- Aspirin and Non Steroidals – low dose aspirin (75mg per day) “junior aspirin” is widely used in those patients with Hughes Syndrome (Antiphospholipid syndrome) or “sticky blood”. Non-steroidals are the first line of treatment in most patients for joint and muscle pains and have replaced high dose aspirin, as they are much kinder on the stomach.
- Anti-malarials – Hydroxychloroquine Plaquenil is a mainstay of treatment for mild to moderate lupus. It has an anti-inflammatory effect as well as providing some protection against sunlight and is often used as the first line of treatment.
- Steroids – are vital and even life saving in acute flares but modern treatment aims at reducing or even stopping steroid treatment wherever possible.
- Immuno-suppressives – in lupus the immune system is overactive hence the development of a number of drugs used to suppress the overactive immune response. These include Azathioprine, Methotrexate and Mofetil as well as the stronger cyclo-phosphomide. The later drug is reserved for patients with active kidney disease and is usually administered by injection.
During the past thirty years, more sensitive blood tests have allowed us to recognise that for every patient with severe lupus, there are many more with subtle forms of the disease who are undiagnosed.
Blood tests are used both for confirmation as well as for monitoring the progress of the illness. The ANA (antinuclear antibody) test, if positive, should be followed by other more specific tests to pinpoint more accurately the extent and type of the disease.
Main tests in lupus:
- Anti-nuclear antibodies ("screening test")
- Anti-DNA antibody ("specific" for lupus)
- Anti-cardiolipin (clotting tendency)
- (ESR) erythrocyte sedimentation rate
- (CRP) C-reactive protein
- Routine blood count & chemistry
Many patients, when first told they have lupus find information scarce and often full of gloom. Until recent years, lupus was widely regarded by doctors as a rare disease - sometimes as a dire disease, involving kidney damage and a fatality rate. They may have advised their patients against pregnancy at all cost and issued other alarming warnings.
However, the real prognosis is good, indeed in the majority of patients, the disease can be brought under control and many patients are able to come off all their medication.
The basic problem is in an alteration in the immune system. The normal immune system, which produces antibodies against foreign invaders, such as bacteria, goes into ‘overdrive’ and produces too many antibodies. This in turn can affect any organ in the body.
The cause is not known. There is a definite genetic tendency but despite years of research, no virus or infectious cause can be identified. Neither is there evidence of an environmental cause.
The current figure for estimated sufferers is 1 in 750 Caucasian females and as high as 1 in 250 amongst Afro-Caribbean females. Although the cause is not known, research suggests that hereditary factors play a role. Advances in genetics have dramatically improved the pace of research for discovering the genes that contribute to lupus susceptibility, severity and mortality. The identification of these genes will provide a framework for understanding the basis of this illness.
For further information about lupus and associated conditions, please visit the website for the St. Thomas' Lupus Trust
Gloucestershire Lupus Group
Contact name: Mrs. Hazel Phillips
The Laurels, Middle Street
St. Thomas Lupus Trust
Contact name: Angie Davidson
The Rayne Intsitute
St. Thomas' Hospital
There is also a 'nurse online' who can answer any questions regarding lupus by e-mail.
Email her at: email@example.com
Website address: www.lupus.org.uk
St. James' House
Website address: www.lupusuk.com