Lupus- a guide for patients
THE LUPUS UK RANGE
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
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.
- 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?
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,
– 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
- 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.
- 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
Facts, Formulas & Other Information Swimming Pool Chemicals: Chlorine: Types of Chlorine % of Chlorine Sodium-dichlorite-s-triazinetrione (Di-Chlor)Liquid Bleach (1/3rd-1/2 the strength Sodium Hypo)Di-Chlor and Tri-chlor are both stabilized chlorine compounds. Cyanuric acid levels will increaseover time with the use of these two types of chlorine. All chlorine types make the
PAFL Round 8 – Match Report Saturday, June 24, 2006 Bluey (Sandy) and Brett Marshall What a weekend! They say it’s written in the stars, but at PAFL it’s all about the clouds -and for this Fiesta weekend the cumulonimbus ruled. As many of us still lay in bed in the early afternoon wondering what Vaughany had done to us the night before, and why Stoney is obsessive/compulsive