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What is Lupus?
So few have heard of it, yet worldwide it's seen as more common than leukaemia, multiple
sclerosis & muscular dystrophy.
Over 30,000 people have the disease in the UK of whom 90% are female. Men & young
children can also be affected by lupus. The ratio of women to men(who are affected) being
9:1.
Lupus is an autoimmune disease, a type of self-allergy, whereby the patient's immune system
creates antibodies which instead of protecting the body from bacteria & viruses attack the
person's own body tissues. This causes symptoms of extreme fatigue, joint pain, muscle
aches, anaemia, general malaise, & can result in the destruction of vital organs. It is a disease
with many manifestations, & each person's profile or list of symptoms is different. Lupus can
mimic other diseases, such as multiple sclerosis & rheumatoid arthritis, making it difficult to
diagnose.
Currently there is no single test that can definitely say whether a person has lupus or not.
Only by comprehensive examination and consideration of symptoms and their history can a
diagnosis be achieved.
Lupus is neither infectious or contagious.
Lupus can be triggeredat puberty
after childbirth
through sunlight
after a prolonged course of
medication
The symptoms:
These may include -extreme fatigue
-joint/muscle pain
-eye problems
-depression
-mouth ulcers
-facial or other rashes
-miscarriage
-hair loss
-anaemia
-fever
-possible involvement of the kidneys, heart, lungs & brain
There is no cure...
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People diagnosed with lupus normally remain under medical care with continuing
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medication.
Many symptoms have less impact as a result, but side effects can often occur.
Lupus can adversely influence the lives of those who suffer the illness, their families &
friends.
SLE - Systemic Lupus Erythematosus
...hard to say - harder to live with..
Lupus FAQ
What is lupus?
Lupus is a chronic (long-lasting) autoimmune disease where the immune system, for
unknown reasons, becomes hyperactive & attacks normal tissue. This attack results in
inflammation & brings about symptoms.
What does autoimmune mean?
'Auto' means 'self', so autoimmune literally means that the immune system fights the body
itself. Instead of fighting & attacking the bad tissues, such as viruses, it turns on itself &
attacks the good tissues.
What is inflammation?
It is a protective process our body uses when tissues are injured. Inflammation helps to
eliminate a foreign body or organism (virus, bacteria) & prevent further injury. Signs of
inflammation include- swelling, redness, warmth & pain.
What are antibodies?
Antibodies are proteins produced by white blood cells (B lymphocytes). Their normal
function is to glue up bacteria and make them easy for the white blood cells to capture and
destroy. When the immune system goes wrong, antibodies can be formed that bind to bits of
the body (an auto-antibody). Sometimes infection can cause auto-antibodies to be produced
and this may be one of the causes of Lupus. The antibodies circulate in the blood, but some of
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the body's cells have walls permeable enough to let some antibodies in. These can then attack
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the DNA in the cell's nucleus. That's why some organs can be attacked during a flare while
others aren't.
What are the different kinds of lupus?
Discoid lupus (also known as Cutaneous lupus) affects the skin.
Systemic lupus attacks multiple systems in the body which may include- the skin, joints,
blood, lungs, kidneys, heart, brain & nervous system.
Drug-induced lupus may develop after taking certain prescription medications. Symptoms
generally disappear after the drug is discontinued.
What are the symptoms of systemic lupus?
The symptoms can include- Arthritis (swelling and pain of the joints), muscle pain and
weakness, fatigue, sun-sensitivity, hair loss, "Butterfly" or malar rash (a rash across the nose
and cheeks), fever, anaemia, headaches, recurrent miscarriages. For more symptoms &
descriptions of symptoms see the symptoms page. Some people will have only a few
symptoms, others may have them all.
What are the symptoms of discoid lupus?
They include a variety of different looking skin rashes, photosensitivity, & sometimes mouth
or nose ulcers.
How is discoid lupus different to systemic lupus?
Discoid Lupus is confined to the skin, whereas systemic lupus may involve any organ system
in the body, as well as the skin.
Can discoid lupus turn into systemic lupus?
In approximately 10% of discoid lupus cases, it evolves & develops into systemic lupus.
However, this can't be predicted or prevented from happening.
What is the difference between drug-induced lupus & systemic lupus?
Systemic lupus is irreversible, whereas drug-induced lupus generally is reversible. The
symptoms of drug-induced lupus generally do not include- kidney involvement or central
nervous system involvement.
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What drugs are most commonly associated with drug-induced lupus?
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The following medications have been definitely proved to be associated with drug-induced
lupus-Procainamide (used for heart rhythm abnormalities), Hydralazine (used for high blood
pressure), Isoniazid (used for tuberculosis), Quinidine (used for heart rhythm abnormalities),
Phenytoin (used for seizures). There are other drugs which might possibly be associated with
drug-induced lupus, but as yet there is no definite proof.
Should people diagnosed with SLE or discoid lupus avoid taking the drugs associated
with drug-induced lupus?
Most of the drugs associated with drug-induced lupus can be safely used in people with SLE
or discoid lupus if there are no suitable alternatives.
How soon after taking the drug do the symptoms appear, & how long after stopping the
drug do they disappear?
Drug-induced lupus requires months to years of frequent use of a drug before symptoms
appear. Usually symptoms disappear after six months after stopping the drug, but it could be
days r weeks, it varies. The ANA may remain positive for years.
What causes lupus?
The exact cause is unknown, but it is likely to be a combination of factors. A person's genetic
make-up & exposure to certain trigger factors may provide the right environment in which
lupus can develop.
Is lupus hereditary?
It is suspected that people inherit something from their parents that predisposes them to
develop lupus. They are not necessarily pre-destined to develop lupus, but they may be more
susceptible. Relatives of lupus patients have an approximate 5-12% greater tendency to get
the disease if family members have it.
How common is lupus?
It is not known why, but lupus occurs more often in certain ethnic groups. The incidence in
Caucasians is approx. 1:1000. In African-Americans, the incidence is approx. 1:250. In
Latinos the incidence is approx. 1:500.
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What can trigger lupus?
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It is believed that certain things may trigger the onset of lupus or cause lupus to flare, these
include- Ultraviolet light, certain prescription drugs & antibiotics, infections or viruses,
hormones & stress.
Are there any medications people with lupus should avoid?
There are no absolute contraindications to medications for people with lupus. But, as people
with lupus are usually 'allergic' people, your doctor should watch for any connection between
flares & medications, especially oral contraceptives, sulfa antibiotics & penicillin.
Is there a test for systemic lupus?
No, there is not a single diagnostic test for SLE.
Why is SLE so difficult to diagnose?
For a number of reasonsSLE is a multi-system disease, & before a multi-system disease can be diagnosed, there have
to be symptoms in many parts of the body & lab work (blood tests) that supports the presence
of a multi-system disease.
SLE is also difficult to diagnose because it is a disease that does not typically develop rapidly,
but develops slowly & evolves over time. Symptoms come & go, it can take time for the
disease to show up in blood tests, which one time can be positive & the next be negative
again. It can take months or even years for enough symptoms to show up for the doctor to be
able to make an accurate diagnosis.
SLE is known as a great imitator, because it mimics so many other diseases & conditions,
which often have to be ruled out.
SLE is difficult to diagnose because there is no one diagnostic test for lupus, the doctor has to
do a full examination of the patient & do various tests, before looking at all the evidence &
coming to a conclusion.
How is SLE diagnosed?
Physicians have to gather information from a variety of sources- past medical history, lab
tests & current symptoms. They use a list of 11 criteria to help diagnose SLE. Generally, a
person needs to satisfy at least 4 out of the 11 criteria before a diagnosis can be made. (see
the diagnosis page for more info.)
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What is the ANA test?
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The anti-nuclear antibody (ANA) test is a blood test that measures the antibodies that are
directed against various components of the nucleus, so-called anti-nuclear antibodies. The
nucleus of living cells contains many chemicals, including the well known DNA & RNA. For
reasons which are unclear, patients produce antibodies which are directed against a number of
these molecules.Throughout the world, the ANA test has become the screening test for lupus.
Patients with active lupus generally have high levels of anti-nuclear antibodies. About 95% of
people with SLE will have a positive ANA test at some point during their disease. It is rare to
have lupus & have a negative ANA test, however it does happen, it can also take a while for
the ANA test to become positive. It is also possible for the ANA to convert from positive to
negative following administration of steroids, cytotoxic drugs or kidney failure.
Unfortunately, the ANA test, although a very useful screening test, is not specific to lupus. It
can be positive in other connective tissue disorders, & also in healthy people. Therefore, a
positive ANA test is not diagnostic of lupus, & is only an indicator. A positive ANA test only
satisfies one criterion, a person would need to satisfy at least three additional criteria before a
doctor would consider diagnosing lupus.
My ANA test came back 'Borderline Positive', what does this mean?
All lab tests have normal values. If a test comes back & the value is at the upper limit of
normal, this is often referred to as being borderline. It is likely that a borderline positive ANA
assumes more importance if other criteria are also present.
What doctor should a lupus patient see?
There are no rules here. Lupus patients can be diagnosed & treated by a number of different
specialists, or indeed a combination which could include- rheumatologist, dermatologist,
nephrologist, immunologist, or they can just be treated by their GP.
Do all lupus patients have the same symptoms?
No, symptoms vary from patient to patient. They even vary within one patient from time to
time. Lupus is a disease that can attack different organ systems of the body, & it therefore
affects everyone differently.
Can an individual with lupus continue to develop new symptoms?
A patient's symptoms can vary from week to week, even from day to day. However it is
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uncommon for the affected organ system to change, e.g. it is rare for a patient with kidney
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What is the connection between lupus & allergies?
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An allergic state produces a very specific antibody to substances such as drugs, pollen &
grass. People with lupus are often very sensitive to such substances.
Is lupus a fatal disease?
The majority of people living with lupus today can expect to live a normal life span. About 20
or so years ago it was a different matter, many more people died from lupus. This was due to
the fact that it was only diagnosed when it was very severe, & treatments weren't as effective.
Now, with better diagnostic facilities, increased awareness & effective treatments, at least
90% of people with lupus will lead a normal lifespan. Lupus does vary in intensity & degree,
& there are people who have a mild case, there are those who have a moderate case & there
are some who have a severe case (severe organ involvement), which tends to be more
difficult to treat & bring under control. Recent studies in longterm survival rates: Patients
diagnosed with Lupus in 1990/95 have 92% chance of living more than the next 5 years (88%
if initial diagnosis was lupus nephritis). This compares with 49% in 1960s. The figure has
been steadily rising over the decades. Also remember that the chance of living more than the
next 5 years for everybody, lupus patient or not, is less than 100%.
When people die of lupus, what do they usually die of?
Overwhelming infection & kidney failure are the two most common causes of death in people
with lupus.
Are people with lupus more likely to develop cancer?
People with lupus are no more likely to develop cancer than people in the general population.
However, people who have received certain chemotherapy drugs do carry the added risk of
developing cancer sometime in later life.
Is there a connection between lupus & multiple sclerosis?
MS & lupus are both autoimmune diseases, & you can have both together, but they are
diagnosed & treated in different ways. Lupus can sometimes mimic the symptoms of MS.
Is lupus like AIDS?
No. In AIDS, the immune system is underactive, but in lupus it is overactive. HIV (which can
lead to AIDS) is transmissible, lupus isn't.
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Can a lupus patient get another autoimmune disease?
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Yes, & it is quite common. Antibodies can develop against a variety of organs, tissues or
glands, resulting in many different diseases. Among the most frequently experienced
autoimmune diseases for a lupus patient to have are Sjogren's Syndrome, multiple sclerosis,
& Hashimoto's thyroiditis.
How can I find out more about lupus?
To start with, read all of the information on this site, & follow the links to other sites.
Secondly, read some of the many books available on lupus, start by visiting the lupus
bookstores on this site, the books are available at a discount! US customers - UK customers.
Join the national lupus charity in your country, e.g. Lupus UK, The Lupus Foundation of
America, they can provide information & support, & run regional groups in your area where
you can meet fellow lupus sufferers.
If you still have any questions that want answering, please visit the Message Boards
Lupus Facts
Only about 30% of lupus sufferers actually have the classical 'butterfly' rash that is
associated with lupus.
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Approximately 10% of lupus patients actually have drug-induced lupus. Drug-induced
11 is usually less severe than SLE & will disappear after the patient stops taking the
lupus
particular drug.
Drugs that have definite proof of an association with drug-induced lupus include Procainamide (Procan or Pronestyl), Hydralazine (Apresoline or Apresazide), Isoniazid
(INH), Quinidine, & Phenytoin (Dilantin).
The widely used acne drug Minocycline, has been shown to cause drug induced lupus
symptoms.
Drugs known to exacerbate lupus or increase the risk of allergic reactions in people
with lupus, include some antibiotics (sulfa, tetracycline)
The term 'lupus' was derived from the Latin word for wolf in an effort to describe one
of the disease's most recognisable features, the rash on the cheeks that suggests a wolf-like
appearance.
The technical name for the disease we know of as lupus was first applied to a skin
disorder by a Frenchman, Pierre Cazenave, in 1851, though descriptive articles detailing the
condition date back to Hippocrates in ancient Greece.
Between 1895 & 1903, the great physician William Osler clearly identified that internal
organs may be involved & that lupus could take on a 'systemic' form.
In 1948, a pathologist named Malcolm Hargreaves discovered the LE cell (Lupus
Erythematosus cell), which was the first blood test used to help diagnose lupus. He found that
70-80% of patients with active SLE possessed these cells.
During the 1950s, the LE cell was shown to be part of an antinuclear antibody (or
ANA) reaction. This led to the development of other tests for autoantibodies.
80% of lupus patients develop the disease between the ages of 15 & 45.
The treatment of lupus aims to suppress the overactive immune system & diminish any
inflammation.
The most commonly used treatments for lupus are NSAIDs (Non-steroidal AntiInflammatory Drugs), Anti-Malarials (known as disease modifying agents), & steroids. These
drugs can be used on their own or in combination.
Occasionally immuno-suppressive drugs need to be used, these include Cytoxan,
Azathioprine & Methotrexate.
The most common sites for skin rashes in lupus patients are the palms, elbows & face.
Often the rashes are subtle, eg. a faint pinkiness may appear around the cheeks & tips of the
fingers or on the soles of the feet.
Many lupus patients are very sun sensitive, & therefore need to cover up well when in
the sun.
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Some lupus patients report of being affected by UV light, eg. from flourescent lights.
There is no way of telling how long a flare will last. After the initial flare, some lupus
patients go into remission & never have another flare, but some patients can be in a flare for
years.
Lupus patients are more likely to contract infections such as salmonella, herpes zoster
& candida(yeast). Infections in lupus patients tend to last longer & require a longer course of
treatment with antibiotics than infections in people who do not have lupus.
Fatigue, malaise, sleep disturbances, myalgias, cognitive impairment & gastrointestinal
symptoms are frequent in patients with lupus, & yet may occur in the absence of an obvious
disease flare or abnormal blood tests.
Fatigue, headache & cognitive dysfunction (memory, attention, concentration) are
symptoms associated with central nervous system (CNS) involvement
Diagnosing lupus
Malar rash
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2 13Discoid rash
Photosensitivity
Mucosal ulcers
Serositis
Arthritis
Renal disorders
Haematological
disorder
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Is It Lupus?
So, you think you may have lupus? What should you do
now?
Swollen, or painful joints
Do you get a rash when you go in the sun?
Do you get mouth ulcers?
Do your fingers/toes go blue, white or red in the cold?
Have you ever had a low red blood cell count (anaemia), low white cell count, or
low platelet count?
Do you get extreme fatigue, even when you've had a good night's sleep?
Have you ever had pleurisy (pain in the chest on breathing in)?
Do you get a red rash on your face, across your cheeks and nose, in the shape of a
butterfly?
If you've answered yes to three or more of the above questions, then there is a chance
that you may have lupus.
Look at your symptoms, to get a diagnosis of lupus, patients usually must have at least
four of the following1. Characteristic rash across the cheek
2. Discoid lesion rash
3. Photosensitivity
4. Oral ulcers
5. Arthritis
6. Inflammation of membranes in the lungs, the heart, or the abdomen
7. Evidence of kidney disease
8. Evidence of severe neurologic disease
9. Blood disorders, including low red and white blood cell and platelet counts
10. Immunologic abnormalities
11. Positive antinuclear antibody (ANA)
Get yourself a good doctor who knows a lot about lupus. Contact your national lupus
charity (e.g. Lupus Foundation of America, Lupus UK) who should be able to
recommend a good lupus doctor.
If you already have a doctor who isn't very good or isn't taking your symptoms
seriously, ask to be referred for a second opnion.
Keep on going and believe in yourself. Many lupus patients often say they feel like
hypochondriacs when visiting their doctor because of all the minor symptoms that they
want to report. It can be a long, hard road to get a diagnosis & it's easy to want to give
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15Sometimes, even their families begin to question whether there is anything really
up.
wrong. The important thing to remember is that you know that there is something
wrong, so you must keep going until you get an answer.
Make a note of all your symptoms, even the ones that you think are not connected.
Take this list with you when you see your doctor. Also make a list of any questions you
have.
Learn about lupus, read books, search the internet & be informed about the symptoms,
treatments & tests. This will help you to communicate with & better understand your
doctor & what is happening.
Autoimmune diseases tend to run in families, although they can change in their
expression from generation to generation. Your grandmother may have had lupus, your
mother Graves' disease, or your sister diabetes. Look back at your family history, and
tell your doctor if anyone had an autoimmune disease, it may help with the diagnosis.
Talk to others. If you are unable to discuss things with your family or friends, make
contact with other lupus sufferers, either through a lupus charity, support group or the
internet. People often tell me what a relief it is to talk to others who know what they
are going through. Visit our message boards for support and advice.
Remember - never give up, keep going until you get a diagnosis!
Adrenal glands
Albumin
Albuminuria
A protein in urine
Alopecia
Hair loss
Anaemia
Analgesic
Antibodies
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Anticardiolipin
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antibody
An antiphospholipid antibody
Anti-DNA
Anti-ENA
Antigen
Drugs originally used to treat malaria that are helpful for lupus
Antinuclear
antibodies(ANA)
Proteins in the blood that react with the nuclei of cells. Seen in
96% of those with SLE, in 5% of healthy individuals, & in
most patients with autoimmune diseases
A titer of 1:80 or above is usually considered positive
Antiphospholipid
antibody
Anti-RNP
Anti-Sm
Anti-SSA
Anti-SSB
Apheresis
Apoptosis
Arthralgia
Pain in a joint
Arthritis
Inflammation of a joint
Aseptic meningitis
Autoantibody
Autoimmunity
B lymphocyte or B
cell
Basophils
Biopsy
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Bullous lupus
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Blood urea nitrogen A product of protein metabolism. When the kidneys fail, the
(BUN)
BUN levels rise, as do the levels of uric acid
Bursa
Butterfly rash
Chillblains
Chromosomes
Chronic
CNS
Cognition
Connective tissue
Complement
Complete blood
count(CBC)
A blood test that measures the amount of red blood cells, white
blood cells, & platelets in the body
Corticosteroid
Cortisone
A synthetic corticosteroid
Creatinine
CREST syndrome
Crossover
syndrome
CRP (C-reactive
protein)
Cutaneous
Cytokine
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18 | D-N | O-Z
A-C
Dermatomyositis
Discoid lupus
Diuretic
DNA
Electro-retinography
ENA
Endocarditis
Inflammation of the inner lining of the heart
Eosinophils
White blood cells that make up 0-5% of all white blood cells.
Eosinophils are involved in allergic responses.
Normal range = up to 0.5
Erythema
A reddish hue
Erythrocytes
Red blood cells, which have no nucleus & transport oxygen to the
tissues
ESR
Fibromyalgia
(fibrositis)
Flare
Symptoms reappear
Gene
Glomerulonephritis
Haematocrit
Haematuria
Haemiparesis
Haemoglobin
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Haemolytic anaemia
Histology
Histopathology
IgG (Immunoglobulin
G)
The major antibody of plasma & the most important part of our
antibody response. Most autoimmune diseases are characterised
by IgG antibodies
IgM
Immune complex
Immunosuppresive
Inflammation
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Lesion
Leukopenia
Livedo reticularis
Lupus anticoagulent
Lupus profundus
Lupus vulgaris
Lymph glands
Lymphocyte
Type of white blood cell that fights infection & mediates the
immune response.
Normal range = 1.20-4.0
Lymphopenia
Macrophages
Mixed connective tissue Exists when a patient who carries the anti-RNP antibody has
disease
features of more than one autoimmune disease
Monocytes
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inflammation.
Normal range = 0.2-1.0
MRI (Magnetic
resonance imaging)
Myasthenia Gravis
Myocarditis
Nephritis
Neuropathy
Neutrophils
NSAID
Pericardial effusion
Pericarditis
Pericardium
Peritonitis
Pernicious anaemia
Petechiae
Phlebitis
Inflammation of a vein
Placebo
Plaquenil
(hydroxychloroquine)
Plasmapheresis
Platelet
Platelet count
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Pleura
Pleural effusion
Pleuritis/pleurisy
Polyarteritis
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Polymyalgia rheumatica An autoimmune disease of the joints & muscles seen in older
patients with high sedimentation rates who have severe aching in
their shoulders, upper arms, hips & upper legs
Polymyositis
Prednisone;
prednisolone
Synthetic steroids
Proteinuria
Pulmonary
hypertension
Pulse steroids
Purpura
Red spots under the skin - due to 'leaky' small blood vessels or to
very low platelet counts
Rash
Raynaud's disease
Raynaud's phenomenon Discolouration of the hands or feet (they turn blue, white or red)
especially with cold temperatures; a feature of an autoimmune
disease
RBC
Remission
Rheumatic disease
Rheumatoid arthritis
Rheumatologist
An internal medicine specialist who has completed at least a 2year fellowship studying rheumatic diseases
Ro-antibody
See anti-SSA
SCLE
Scleritis
Scleroderma
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Sedimentation rate
Septrin
Serositis
Sjogren's syndrome
Dry eyes, dry mouth, & arthritis observed with most autoimmune
disorders or by itself (primary Sjogren's)
Synovitis
Systemic
T cell
Temporal arteritis
Thrombocytopenia
Thymus
Titer
Tolerance
UV light
Uremia
Vasculitis
WBC
Symptoms list
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The following are potential symptoms that may be present in lupus, along with what
might be causing those symptoms. Not everyone with lupus will have these symptoms,
no two lupus patients are the same. Many of the causes listed are rare, but any new or
unexplained symptoms should always be checked out by your physician. Please note
that these symptoms could also be caused by other conditions other than lupus.
Symptoms
Possible causes
Rash on cheeks/nose
Itching/burning rash
Mouth/nose ulcers
Easy bruising
Joint pain/swelling
Muscle aches/tenderness
Fatigue
Fever
Headache
Bleeding gums
Cold hands/feet
Raynaud's phenomenon.
Swollen legs
Swollen ankles
Kidney involvement.
Pleurisy.
Weight gain
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Weight
loss
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Nausea/vomiting
Frequent urination
Foaming urine
Kidney involvement.
Confusion
Seizures
Memory problems
Dry eyes
Sjogren's Syndrome.
Dry mouth
Sjogren's Syndrome.
Amitriptyline Hydrochloride
Aspirin
Azathioprine
Cellcept
Celebrex
Chloroquine
Cyclosporine
Diclofenac Systemic
Doxepin Hydrochloride
Hydroxychloroquine Sulfate
Ibuprofen
Indomethacin
Ketoprofen
Methotrexate
Mycophenolate Mofetil
Nabumetone
Naproxen
Nortriptyline Hydrochloride
Oxaprozin
Pilocarpine Systemic
Prednisone
Protriptyline Hydrochloride
Quinacrine Hydrochloride
Tramadol Hydrochloride
Warfarin
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Bagi Odapus (Orang dengan Penyakit Lupus) & Pemerhati, mari bergabung pada acara
Kopdar Odapus yang juga di hadiri oleh Prof. dr. Zubairi Djoerban Sp. PD-KHOM,
Akan diadakan pada:
Waktu : Sabtu, 19 November 2011
Jam : 10.00 15.00 WIB
Tempat :
@Lab Bistro
Kompleks Lab School IKIP
Jl. Pemuda Rawamangun
Jakarta Timur
Konfirmasi kan kehadiran melalui sms :
1. Eva Meliana (0813 82909285)
2. Dyah Haryatie (0817 9819079)
3. Una Nur Husna (0857 19343120)
See You There !!!
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Azathioprine (Imuran)
Cyclophosphamide (Cytoxan)
Mycophenolate (CellCept)
Methotrexate (Rheumatrex)