8/3/2019 Guide for Patients

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FACTSHEETS

Published by Registered Charity No. 1051610

Further fact sheets are available as follows:

LUPUS Incidence Within The Community

LUPUS The Symptoms and Diagnosis

LUPUS The Heart and Lungs

LUPUS and The Brain

LUPUS and The Kidneys

LUPUS and The Feet

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

LUPUS and Associated Conditions

LUPUS UK is the registered national charity caring for

people with lupus and has some 7,000 patients inmembership who are supported by 30 regional groups.

LUPUS UK acknowledges with gratitude the assistance

of Prof. Graham Hughes (London Lupus Centre, London

Bridge Hospital) and Dr Caroline Gordon and colleagues

(Queen Elizabeth Hospital, Birmingham) in the provision

of clinical information towards the production of thesefact sheets.

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 be

pleased to provide a booklist and details of

membership.

THE LUPUS UK RANGE

OF FACT SHEETS

ST JAMES HOUSE, EASTERN ROADROMFORD, ESSEX RM1 3NH

TEL: 01708 731251 FAX: 01708 731252

www.lupusuk.org.uk 

Non-medication measures

a. Rest, adequate sleep, modifying activity duringtime of flare.

b. Minimising stress: Major lifestyle modification andco-operation with and by family members,spouse, and employer to achieve this adjustmentmay be essential in keeping the disease under

control. Pain clinics, an interested psychologistor psychiatrist may be helpful.

c. Avoidance of provoking factors - sun, excessiveheat, fatigue, certain medications and infections.

d. Patient awareness of early symptoms, which maysignal a flare and prompt reporting of these totheir physician allowing earlier treatment.

What is the outlook?

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.If diagnosed early and treated appropriately at anearly stage, lupus may settle and ultimately go intoremission – i.e. the patient requires no medication.With co-operation between the patient, family andphysician the problems associated with the diseasecan be significantly modified.

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LUPUS

 A Guide for Patients

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LUPUS

 A Guide for Patients

What is lupus?

Systemic Lupus Erythematosus: is a diseasewhere the immune system becomes overactive; achronic disease which affects one or many tissuesof the body: skin, joints, muscles, blood vessels,blood cells, brain and nerves, internal organs suchas lungs, heart, kidneys, gastrointestinal tractand/or the linings around internal organs.Inflammatory and immune responses account formany of the symptoms observed in systemic lupus.

Discoid Lupus (DLE): In general DLE is a benigndisease affecting the skin, which rarely affects theinternal organs, i.e. rarely becomes systemic. Moststudies suggest that approximately 5% of patientswith discoid lupus at some stage may suffer ageneralised flare of the disease, involving joints,kidneys etc. and may progress to developingSystemic Lupus Erythematosus.

Drug-induced Lupus (DILE): can occur during theadministration of certain drugs in susceptibleindividuals.

Who gets lupus?

Lupus affects women at least ten times as often asmen, especially women in the childbearing years. Itcan, however, occur in children or old age. Afro-Caribbean, Asian and Eastern races are more likelyto have lupus.

How does lupus affect the body?

Lupus is a highly variable disease. Potentially, it canaffect every organ and tissue of the body. In any

individual patient, however, only some of these mayever be affected; the tissues and systems involvedmay change and the intensity of involvement mayvary with time. The disease is very much anindividual illness differing from person to person.

What are the features of lupus?

Fatigue, joint and muscle pain, flu-like illness, skin

rashes (including the classical “butterfly” rash on thecheeks and nose), hair-loss and, more importantly,internal organ involvement including pleurisy, kidneydisease and brain inflammation. Some patients withlupus have a clotting tendency and this can present,for instance, as a thrombosis in the vein or an artery.

How serious is lupus?

In terms of how disruptive the disease is to life, mostSLE is mild and with appropriate care these patientscan live a virtually normal life with only periodic, brief interruption during times of flare but no significant

threat to their internal organs. They may, however,need to make certain adaptations to their home andlifestyle to make life easier at these times. Forpatients with major kidney or central nervoussystem or vascular involvement the disease requiresmuch more intensive medical follow up andtreatment and has a much greater impact onlifestyle. But even these patients can often have longperiods of remission.

How is lupus diagnosed?

• Patient awareness of symptoms and accuraterecording of these to the doctor is essential.

• Medical history and physical examinationprovide most of the data required for diagnosis.

• Laboratory tests help support the diagnosis

Blood tests Antibody Test, Blood Count (CB),Sedimentation Rate, ComplementStudies, Blood Chemistry Tests.

Urinalysis Often 24 hour urine to evaluatekidney involvement.

Other Skin Biopsy, Chest X-ray andECG (Electrocardiogram).

Other Echocardiogram, Brain Scan, EEGStudies (Electroencephalogram), Lung

Functions Tests, Abdominal CTScan, EMG (Electromyogram).

Occasional Kidney Biopsy.

 Tests

How is lupus treated?

Medication - type of medication is determined bythe clinical manifestations, and severity of symptoms.

Non-steroidal anti-inflammatory agents areused for mild disease and painful symptoms – joints,muscle pain, pleurisy, headaches, etc. Someexperimentation may be needed to find medicationwith the least side effect and greatest benefit.

 Anti-malarials – Hydroxychloroquine is a usefuldrug in mild to moderate disease and can oftencontrol joint symptoms, pleurisy and skininvolvement. Benefit usually occurs gradually overseveral months and this type of medication isfrequently used with non-steroidal anti-inflammatorydrugs (NSAIDs).

Steroids - Generally reserved for more seriousmanifestations of the disease (vasculitis, centralnervous system, kidney, etc.) and very high dosesmay be required. It is sometimes necessary to usethem for non-life threatening manifestations such asarthritis, pleurisy, but here the dose is kept minimaland for as short a time as possible.

Cytotoxic drugs - These are reserved for severedisease either not responsive to high dose steroidsor requiring prolonged use of unacceptably highdoses of steroids. Examples include:cyclophosphamide, azathioprine.

More information regarding medication can beobtained from the Lupus and Medication fact sheet available from National Office.