Lupus- a guide for patients

THE LUPUS UK RANGE
on-medication measures
Rest, adequate sleep, modifying activity during OF FACT SHEETS
A Guide for Patients
Further fact sheets are available as follows:
b. Minimising stress: Major lifestyle modification and LUPUS Incidence Within The Community
spouse, and employer to achieve this adjustment LUPUS The Symptoms and Diagnosis
may be essential in keeping the disease under LUPUS The Heart and Lungs
control. Pain clinics, an interested psychologist LUPUS and The Brain
LUPUS and The Kidneys
LUPUS and The Feet
c. Avoidance of provoking factors - sun, excessive heat, fatigue, certain medications and infections.
d. Patient awareness of early symptoms, which may signal a flare and prompt reporting of these totheir physician allowing earlier treatment.
What is the outlook?
LUPUS The Joints and Muscles
LUPUS The Skin and Hair
LUPUS The Mouth, Nose and Eyes
LUPUS Fatigue and Your Lifestyle
LUPUS and Men
LUPUS and Light Sensitivity
LUPUS and Pregnancy
LUPUS and Blood Disorders
LUPUS and Medication
In summary, SLE is a potentially serious disease,which can affect almost any system of the body. Wedo not yet know what causes it. The outlook forsurvival has improved in recent years and mostpatients with SLE will continue to have mild disease.
LUPUS and Associated Conditions
LUPUS UK is the registered national charity caring forpeople with lupus and has some 7,000 patients inmembership who are supported by 30 regional groups.
If diagnosed early and treated appropriately at anearly stage, lupus may settle and ultimately go into LUPUS UK acknowledges with gratitude the assistance remission – i.e. the patient requires no medication.
of Prof. Graham Hughes (London Lupus Centre, London With co-operation between the patient, family and Bridge Hospital) and Dr Caroline Gordon and colleagues physician the problems associated with the disease (Queen Elizabeth Hospital, Birmingham) in the provisionof clinical information towards the production of these LUPUS UK also thanks the Wooler Walkers(Northumberland) for their valued sponsorship towardsthe cost of producing the fact sheets.
Please contact our National Office should you requirefurther information about lupus. LUPUS UK will bepleased to provide a booklist and details ofmembership. TEL: 01708 731251 FAX: 01708 731252
www.lupusuk.org.uk
individual patient, however, only some of these may ever be affected; the tissues and systems involved may change and the intensity of involvement may A Guide for Patients
vary with time. The disease is very much an individual illness differing from person to person.
hat are the features of lupus?
Fatigue, joint and muscle pain, flu-like illness, skin hat is lupus?
rashes (including the classical “butterfly” rash on thecheeks and nose), hair-loss and, more importantly,internal organ involvement including pleurisy, kidney Systemic Lupus Erythematosus: is a disease
disease and brain inflammation. Some patients with How is lupus treated?
where the immune system becomes overactive; a lupus have a clotting tendency and this can present, chronic disease which affects one or many tissues for instance, as a thrombosis in the vein or an artery.
Medication - type of medication is determined by
of the body: skin, joints, muscles, blood vessels, the clinical manifestations, and severity of symptoms.
blood cells, brain and nerves, internal organs suchas lungs, heart, kidneys, gastrointestinal tract How serious is lupus?
Non-steroidal anti-inflammatory agents are
and/or the linings around internal organs.
used for mild disease and painful symptoms – joints, Inflammatory and immune responses account for In terms of how disruptive the disease is to life, most muscle pain, pleurisy, headaches, etc. Some many of the symptoms observed in systemic lupus.
SLE is mild and with appropriate care these patients experimentation may be needed to find medication can live a virtually normal life with only periodic, brief with the least side effect and greatest benefit.
Discoid Lupus (DLE): In general DLE is a benign
interruption during times of flare but no significant disease affecting the skin, which rarely affects the threat to their internal organs. They may, however, Anti-malarials – Hydroxychloroquine is a useful
internal organs, i.e. rarely becomes systemic. Most need to make certain adaptations to their home and drug in mild to moderate disease and can often studies suggest that approximately 5% of patients lifestyle to make life easier at these times. For control joint symptoms, pleurisy and skin with discoid lupus at some stage may suffer a patients with major kidney or central nervous involvement. Benefit usually occurs gradually over generalised flare of the disease, involving joints, system or vascular involvement the disease requires several months and this type of medication is kidneys etc. and may progress to developing much more intensive medical follow up and frequently used with non-steroidal anti-inflammatory treatment and has a much greater impact on lifestyle. But even these patients can often have longperiods of remission.
Drug-induced Lupus (DILE): can occur during the
Steroids - Generally reserved for more serious
administration of certain drugs in susceptible manifestations of the disease (vasculitis, central How is lupus diagnosed?
nervous system, kidney, etc.) and very high dosesmay be required. It is sometimes necessary to use Patient awareness of symptoms and accurate ho gets lupus?
them for non-life threatening manifestations such as recording of these to the doctor is essential.
arthritis, pleurisy, but here the dose is kept minimal Lupus affects women at least ten times as often as and for as short a time as possible.
men, especially women in the childbearing years. It provide most of the data required for diagnosis.
Cytotoxic drugs - These are reserved for severe
can, however, occur in children or old age. Afro- Laboratory tests help support the diagnosis disease either not responsive to high dose steroids Caribbean, Asian and Eastern races are more likely or requiring prolonged use of unacceptably high ow does lupus affect the body?
More information regarding medication can be Lupus is a highly variable disease. Potentially, it can obtained from the Lupus and Medication fact sheet affect every organ and tissue of the body. In any

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