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About Lupus

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Page 1: About Lupus

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Page 2: About Lupus

2http://www.thelupussite.com/

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 triggered- ·at puberty ·during the menopause ·after childbirth ·after viral infection   ·through sunlight ·as a result of trauma  ·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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3People diagnosed with lupus normally remain under medical care with continuing 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 the body's cells have walls permeable enough to let some antibodies in. These can then attack 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.

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4What 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.

What drugs are most commonly associated with drug-induced lupus? 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

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5susceptible. 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.

What can trigger lupus? 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 reasons- SLE 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.)

What is the ANA test? 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

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6people 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 uncommon for the affected organ system to change, e.g. it is rare for a patient with kidney disease to develop central nervous system lupus.

Is lupus infectious or contagious? No, it is neither.

Is there a cure for lupus? At present there is no cure for lupus, but research is being carried out the world over, to find new treatments for lupus & to find out what causes lupus to develop, so there is hope for the future. However, lupus can be controlled using medications.

How is lupus treated? The majority of lupus symptoms are due to inflammation & so the treatment is aimed at reducing that inflammation. There are four families of medications used in the treatment of lupus- Nonsteroidal anti-inflammatory drugs (NSAIDs), corticosteroids, antimalarials, & cytotoxic drugs (chemotherapy). For more information see the medications page.

What is a flare? A flare is a sudden change of disease activity, for example, the development of new symptoms. A patient may suddenly feel weak & have joint & muscle aches. Flares can take on many different forms, indicating that the disease is quite active.

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7What is an exacerbation? An exacerbation is a 'worsening' & is a term that is generally synonymous with a flare.

What is remission? A remission is a period of disease-free activity. Certain cases of lupus have become permanently inactive, or in total remission. Although total remission is rare, partial remission - a definite, but limited, period of inactive disease - is more common.

How long will a flare last? How long will remission last? There is no way of predicting how long a flare will last when it comes, nor is there any way of predicting how long remission will last when it comes.

What is the connection between lupus & allergies? 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.

Can a lupus patient get another autoimmune disease? 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

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8autoimmune 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

There is currently no single test that can definitely say whether a person has lupus or not.

There are three different types of lupus - Discoid(cutaneous) lupus, Systemic lupus & Drug-induced lupus.

In approximately 10% of cases of discoid lupus, it evolves & develops into systemic lupus.

There are various factors thought to trigger the onset of lupus, or cause lupus to flare, these include - UV light, certain prescription drugs, infection, certain antibiotics, hormones, & possibly stress.

Approximately 95% of lupus patients have a positive ANA test.

90% of lupus sufferers are female.

Only about 30% of lupus sufferers actually have the classical 'butterfly' rash that is associated with lupus.

Approximately 10% of lupus patients actually have drug-induced lupus. Drug-induced lupus is usually less severe than SLE & will disappear after the patient stops taking the 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).

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9 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 Anti-Inflammatory 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.

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.

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10 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  

Lupus is a difficult disease to diagnose, & can be overlooked, often for years, unless the GP or consultant is alert to it's possibilities.

How do doctors know if you’ve got Lupus?

Your medical history - what you tell the doctor What they find when we examine you What the blood tests show

To help distinguish Lupus from other diseases, physicians of the American Rheumatism Association have established a list of 11 abnormalities which, when combined, point to lupus.

To make a diagnosis of Lupus the patient must have had at least FOUR of these 11 manifestations at any time since the onset of the disease.

1 Malar rash fixed red rash over the cheeks

2 Discoid rash red patches of skin associated with scaling and plugging of the hair follicles

3  Photosensitivity rash after exposure to sunlight

4  Mucosal ulcers small sores that occur in mucosal lining of mouth and nose

5 Serositis inflammation of the delicate tissues covering internal organs and abdominal pain

6 Arthritis -very common in lupus, pain in the joints  

7 Renal disorders usually detected by routine blood and urine analysis

8 Neurological disorder seizures or psychosis

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119 Haematological disorder

haemolytic anaemia, leukopenia, thrombocytopenia  

10 Immunologic disorder tests on LE cells, anti-DNA and anti-SM antibodies  

11 Anti-Nuclear Antibody (ANA blood test)

when found in the blood and the patient is not taking drugs, it is known to cause a positive test for lupus in most cases, but is not necessarily conclusive  

The above criteria were laid down by the ACR in 1982.  Dr Graham Hughes  (St. Thomas' Hospital, London) has since come up with an 'alternative list of criteria'.  

What blood tests are done to help diagnose Lupus?

Full Blood Count (FBC) - Detects anaemia, low platelets, low white blood cells

Creatinine and electrolytes - Measures the salts in the blood and gives an idea of kidney function

Liver function tests - Includes measurement of liver enzymes (indicator of liver cell damage). Measures albumin (marker of kidney problem with leakage of the proteins)

ESR (Erythrocyte Sedimentation Rate) - A marker of non-specific inflammation, tends to be raised in lupus

CRP (C-reactive protein) - Another inflammatory marker, but this does NOT usually go up in Lupus

Urine - Measure protein and blood cells in urine (should be none). Identify ‘casts’ (blobs of protein escaped from the bloodstream because the kidneys are leaky)

Blood clotting tests - Tell how ‘sticky’ the blood is. Includes ‘lupus anti-coagulant’

Immunological tests

Is It Lupus?

 

So, you think you may have lupus? What should you do now?

Swollen, or painful jointsDo 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?

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12Have 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 following-

1. Characteristic rash across the cheek 2. Discoid lesion rash 3. Photosensitivity 4. Oral ulcers 5. Arthritis6. Inflammation of membranes in the lungs, the heart, or the abdomen 7. Evidence of kidney disease8. 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 up. Sometimes, even their families begin to question whether there is anything really 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

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13mother 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!

  

Lupus Dictionary A-C

 A-C | D-N | O-Z

Acute Of short duration & coming on suddenly

Adrenal glands Small organs, located above the kidney, that produce many hormones, including corticosteroids & epinephrine

Albumin A protein that circulates in the blood & carries materials to cells

Albuminuria A protein in urine

Alopecia Hair loss

Anaemia A condition resulting from low red blood cell counts

Analgesic A drug that alleviates pain (painkiller)

Antibodies Special protein substances made by the body's white cells for defense against bacteria & other foreign substances

Anticardiolipin antibody

An antiphospholipid antibody

Anti-DNA Antibodies to DNA;seen in half of those with systemic lupus & implies serious disease

Anti-ENA Old term for extractable nuclear antibodies, which largely consist of anti-SM & anti-RNP antibodies

Antigen A substance that stimulates antibody formation;in lupus, this can be a foreign substance or a product of the patient's own body

Anti-inflammatory An agent that counteracts or suppresses inflammation

Antimalarials 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

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14Antiphospholipid antibody

Antibodies to a constituent of cell membranes seen in one-third of those with SLE. In the presence of a co-factor, these antibodies can altert clotting & lead to strokes, blood clots, miscarriages, & low platelet counts. Also detected as the lupus anticoagulent

Anti-RNP Antibody to ribonucleoprotein. Seen in SLE & mixed connective tissue disease

Anti-Sm Anti-Smith antibody; found only in lupus

Anti-SSA or the Ro antibody, is associated with Sjogren's syndrome, sun sensitivity, neonatal lupus, & congenital heartblock

Anti-SSB or the La antibody, is almpost always seen with anti-SSA

Apheresis Process of removing blood or some component of it from the body.

Apoptosis Programmed cell death

Arthralgia Pain in a joint

Arthritis Inflammation of a joint

Aseptic meningitis Inflammation of the lining of the brain (meninges) that is not due to any infectious agent

Autoantibody An antibody to one's own tissues or cells

Autoimmunity Allergy to one's own tissues

B lymphocyte or B cell

A white blood cell that makes antibodies

Basophils Make up less than 1% of white blood cells. These specialised cells combat parasitic or fungal invasion, & also play a roll in allergy. Normal range = up to 0.15

Biopsy Removal of a bit of tissue for examination under the microscope

Bullous lupus Produces fluid-filled blisters or a rash similar to that of chickenpox.

Blood urea nitrogen (BUN)

A product of protein metabolism. When the kidneys fail, the BUN levels rise, as do the levels of uric acid

Bursa A sac of synovial fluid between tendons, muscles, & bones that promotes easier movement

Butterfly rash Reddish facial eruption over the bridge of nose & cheeks, resembling a butterfly in flight. Also known as Malar rash.

Cardiac tamponade Accumulation of fluid around the heart.

Cartilage Tissue material covering bone

Chillblains A term used to describe cold-blisters on or inflammation of the fingers, toes or ears

Chromosomes Rod-shaped bodies in nucleus of cells containing the genes

Chronic Persisting over a long period of time

CNS Central nervous system

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15Cognition Awareness; ability to think methodically

Connective tissue The 'glue' that holds muscles, skin & joints together

Complement A group of proteins that, when activated, promote & are consumed during inflammation. CH50 (Complement, total hemolytic), Normal range=52-128 CAE units Complement C4, Normal range = 30-60 mg/dl Complement C3, Normal range = 83-240 mg/dl

Complete blood count(CBC)

A blood test that measures the amount of red blood cells, white blood cells, & platelets in the body

Corticosteroid Any natural anti-inflammatory hormone made by the adrenal cortex; can also be made synthetically

Cortisone A synthetic corticosteroid

Creatinine A waste product of creatine metabolism. There are high levels of creatinine in the blood when the kidneys are not functioning properly

CREST syndrome A form of limited sclerodoma characterised by Calcium deposits under the skin, Raynaud's phenomenon, Esophageal dysfunction, Sclerodactyly or tight skin, & a rash called Telangiectasia

Crossover syndrome

An autoimmune process that has features of more than one rheumatic disease(e.g. lupus & scleroderma)

CRP (C-reactive protein)

A blood protein. Raised levels are found in inflammation such as infections

Cutaneous Relating to the skin

Cytokine A group of chemicals that signal cells to perform certain actions

 A-C | D-N | O-Z

Dermatomyositis An autoimmune process directed against muscles associated with skin rashes

Discoid lupus A thick plaquelike rash seen in 20% of those with SLE. If the patient has the rash but not SLE, he or she is said to have cutaneous (discoid) lupus erythematosus

Diuretic A drug that helps to make more urine

DNA Deoxyribonucleic acid. The body's building blocks. A molecule responsible for the production of all the body's proteins

ECG (or EKG) Electrocardiogram, a recording of electrical forces from the heart

Electro-retinography A sensitive screening test for early abnormalities of the retina of the eye

ENA Extractable Nuclear Antibody. Blood test that covers Anti-RNP, Anti-Sm, Anti-La, Anti-Ro antibodies.

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16Endocarditis 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 Erythrocyte sedimentation rate. The blood test used as a 'barometer' of inflammation. Normal range = male 0-15mm/hour; female 0-20 mm/hour

Fibromyalgia (fibrositis)

A pain amplification syndrome characterised by fatigue, a sleep disorder, & tender points in the soft tissues; can be caused by steroids & mistaken for lupus, although 20% of those with lupus have fibromyalgia

Flare Symptoms reappear

Gene The biologic unit of heredity located on a particular chromosome

Glomerulonephritis Inflammation of the glomerulus of the kidney; seen in one-third of patients with lupus

Haematocrit A measurement of red blood cell levels. Low levels produce anaemia

Haematuria Red blood cells in the urine

Haemiparesis Paralysis or weakness on one side of the body

Haemoglobin Oxygen-carrying protein of red blood cells. Low levels produce anaemia.Normal range = 13.2-17.0

Haemolytic anaemia Anaemia caused by premature destruction of red blood cells due to antibodies to the red blood cell surface

Histology The study of the microscopic structure of tissue

Histopathology The study of microscopic changes in diseased tissue

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 Initially produced to fight antigens but soon decreases & allows IgG to take over. It plays an important but secondary role in autoimmunity

Immune complex An antigen & antibody together

Immunosuppresive A medication such as cyclophosphamide or azathioprine, which treats lupus by supppressing the immune system

Inflammation Swelling, heat, & redness resulting from the infiltration of white blood cells into tissues

Interstitial pneumonitis Atypical pneumonia due to either a virus or unknown factors

Intravenous pyelogram (IVP)

An x-ray examination of the kidneys

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17LE cell Specific cell found in blood specimens of most lupus patients. The

LE cell is a white blood cell that has swallowed the nucleus of another white blood cell

Lesion A change in tissue due to injury or disease

Leukopenia A low white blood cell count.

Livedo reticularis A blotchy purplish discoloration of blood vessels, usually on the wrists and knees

Lupus anticoagulent A means of detecting antiphospholipid antibodies from prolonged clotting times

Lupus profundus Inflammation of subcutaneous fat

Lupus vulgaris Tuberculosis of the skin; not related to systemic or discoid lupus

Lymph glands Glands situated strategically around the body to protect against the spread of infection

Lymphocyte Type of white blood cell that fights infection & mediates the immune response.Normal range = 1.20-4.0

Lymphopenia A decrease in the number of lymphocytes in the blood.

Macrophages Cells that eat antigens, immune complexes, bacteria, & viruses

Mixed connective tissue disease

Exists when a patient who carries the anti-RNP antibody has features of more than one autoimmune disease

Monocytes White cells that represent about 5% of circulating blood cells. They are responsible for processing foreign materials (antigens), & the destroying cells & tissue debris that are by products of inflammation. Normal range = 0.2-1.0

MRI (Magnetic resonance imaging)

The form of scan using magnetism rather than x-rays

Myasthenia Gravis Disease in which antibodies block nerve impulses from being properly transmitted to the muscle cells; as a result, muscles become weak

Myocarditis Inflammation of the heart

Nephritis Inflammation of the kidney

Neuropathy Disease of the nerves

Neutrophils White blood cells, made in the bone marrow. 50-70% of circulating white cells are neutrophils. Normal range = 2.2-7.5

NSAID Nonsteroidal anti-inflammatory drug, or agent that fights inflammation by blocking the actions of prostaglandin.

  A-C | D-N | O-Z

 A-C | D-N | O-Z

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18Panniculitis Inflammation of subcutaneous fat

Pericardial effusion Fluid around the sac of the heart

Pericarditis Inflammation of the pericardium

Pericardium A sac lining the heart

Peritonitis Inflammation of the lining of the abdomen

Pernicious anaemia Condition caused by vitamin B12 deficiency & characterised by anaemia & spinal-cord abnormalities

Petechiae Small haemorrhages, or pinpoint lesions, on the skin

Phlebitis Inflammation of a vein

Placebo Inactive substance (such as a sugar pill) given to a patient either for its pleasing effect or as a control in experiments with an active drug

Plaquenil (hydroxychloroquine)

An antimalarial drug used in the treatment of lupus.Usual dose is 1-2 tablets daily(200-400mg) Possible side effects include - loss of appetite, nausea, indigestion, headache, diarrhoea, itching or rash, rarely hydroxychloroquine may affect the eyes (regular checks can monitor this)

Plasmapheresis Filtration of blood plasma through a machine to remove proteins that may aggravate lupus

Platelet A component of blood responsible for clotting

Platelet count Normal range = 150,000-450,000/cmm

Pleura A sac lining the lung

Pleural effusion Fluid in the sac lining the lung

Pleuritis/pleurisy Irritation or inflammation of the ling of the lung

Polyarteritis A disease closely related to lupus featuring inflammation of medium & small-sized blood vessels

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 An autoimmune disease that targets muscles

Prednisone; prednisolone

Synthetic steroids

Proteinuria Excess protein levels in the urine

Pulmonary hypertension

Elevated blood pressure in the lungs

Pulse steroids Very high doses of corticosteroids given intravenously over 1 to 3 days to critically ill patients

Purpura Red spots under the skin - due to 'leaky' small blood vessels or to very low platelet counts

Rash Inflammation of the skin

Raynaud's disease Isolated Raynaud's phenomenon; not part of any other disease

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19Raynaud'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 Red blood cell count Normal range = 4.20-5.80

Remission Quiet period free from symptoms, but not necessarily representing a cure

Rheumatic disease Any of 150 disorders affecting the immune or musculoskeletal systems. About 30 of these are also autoimmune

Rheumatoid arthritis Chronic disease of the joints marked by inflammatory changes in the joint-lining membranes, which may give positive results on tests of rheumatoid factor & ANA

Rheumatologist An internal medicine specialist who has completed at least a 2-year fellowship studying rheumatic diseases

Ro-antibody See anti-SSA

SCLE Subacute cutaneous lupus erythematosus. A rash, often circular & distributed on the chest, neck & upper arms. Sometimes seen in patients whose blood tests are negative. It is very sensitive to UV light. 

Scleritis Inflammation (and redness) in the white of the eye

Scleroderma An autoimmune disease featuring rheumatoid-type inflammation, tight skin, & vascular problems

Sedimentation rate Test that measures the precipitation of red cells in a column of blood; high rates usually indicate increased disease activity

Septrin An antibiotic - often causes rashes in lupus patients

Serositis Inflammation of the lining (serosa) of organs - usually either pleurisy, pericarditis, or peritonitis

Sjogren's syndrome Dry eyes, dry mouth, & arthritis observed with most autoimmune disorders or by itself (primary Sjogren's)

Synovitis Inflammation of the tissues lining a joint

Systemic Pertaining to or affecting the body as a whole

T cell A lymphocyte responsible for immunologic memory

Temporal arteritis Inflammation of the temporal artery (located in the scalp) associated with high sedimentation rates, systemic symptoms, & sometimes loss of vision

Thrombocytopenia Low platelet counts

Thymus A gland in the neck area responsible for immunologic maturity

Titer Amount of a substance, such as ANA

Tolerance The failure to make antibodies to an antigen

UV light Ultraviolet light. Its spectrum includes UVA (320 to 400 nanometers), UVB (290 to 320 nm), & UVC (200 to 290 nm) wavelengths

Page 20: About Lupus

20Uremia Marked kidney insufficiency frequently necessitating dialysis

Vasculitis Inflammation of the blood vessels

WBC White blood cell count Normal range = 3.8-11.0

  

Symptoms list  

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 Classic 'butterfly' rash seen in SLE.

Scaly, disk shaped scarring rash

Discoid lupus, which can appear on it's own, or as part of SLE.

Itching/burning rash Subacute cutaneous lupus. Hives.

Mouth/nose ulcers A common symptom of SLE.

Easy bruising Could indicate low platelet count.

Alopecia (hair loss)Part of SLE/DLE, but can also be caused by steroids, cytotoxics or infection.

Joint pain/swelling Inflammation of the lining of the joint caused by lupus.

Muscle aches/tendernessInflammation caused by lupus, can also be caused by fibromyalgia.

FatigueA very common lupus symptom. Can also indicate other things such as anaemia or infection.

FeverA common lupus symptom, caused by inflammation or infection. Pericarditis, myocarditis. Vasculitis. Pneumonitis.

Headache Common lupus symptom. Can indicate CNS involvement.

Bleeding gumsCould be caused by anaemia. Could indicate low platelet count.

Cold hands/feet Raynaud's phenomenon.

Pain in chest, relieved by sitting up

Pericarditis.

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21Short of breathPleurisy. Pericarditis. Myocarditis. Heart attack. Pneumonitis. Pulmonary embolism.

Swollen legs Pericarditis. Venous thrombosis (bloot clot)

Swollen ankles Kidney involvement.

Chest pain, worse when breathing in

Pleurisy.

Red lace-like rash on arms and legs

Livedo reticulares, a common symptom of vasculitis.

Weight gainKidney involvement. Steroid side effect. Result of inflammation.

Weight lossCould be caused by active lupus. Could indicate problems with the GI tract.

Nausea/vomitingMedication side effect. Heart attack. Renal failure. Could indicate problems with the GI tract.

Frequent urination Urinary tract infection.

Foaming urine Kidney involvement.

Pain in back, around kidneys

Urinary tract infection (kidney failure does not produce pain).

Confusion Could indicate CNS involvement.

SeizuresCould be a result of lupus cerebritis. Possible reaction to medications.

Memory problemsCommon in lupus. Could indicate CNS involvement, or could be a drug side effect.

Dry eyes Sjogren's Syndrome.

Dry mouth Sjogren's Syndrome.

Drugs used in the treatment of lupus

 

I have included information on the drugs most commonly used in the treatment of lupus, including NSAIDS, antimalarials, steroids & cytotoxic drugs. For more information on how these drugs are used to treat lupus, see the medications page. Read reviews and post your own in our medications review forum. The drugs are listed in alphabetical order by their generic names.

Amitriptyline Hydrochloride AspirinAzathioprineCellcept

Methotrexate Mycophenolate MofetilNabumetone Naproxen

Page 22: About Lupus

22CelebrexChloroquine Cyclosporine Diclofenac Systemic Doxepin HydrochlorideHydroxychloroquine SulfateIbuprofenIndomethacinKetoprofen

Nortriptyline Hydrochloride Oxaprozin Pilocarpine Systemic PrednisoneProtriptyline HydrochlorideQuinacrine Hydrochloride Tramadol Hydrochloride Warfarin

KOPDAR ODAPUS (Odapus Gathering)

November 5, 2011Leave a reply

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 2011Jam : 10.00 – 15.00 WIB

Tempat :

@Lab BistroKompleks Lab School – IKIPJl. Pemuda – RawamangunJakarta Timur

Konfirmasi kan kehadiran melalui sms :

Page 23: About Lupus

231. Eva Meliana (0813 82909285)2. Dyah Haryatie (0817 9819079)3. Una Nur Husna (0857 19343120)

See You There …!!!

0-4 years old5-9 years old

10-14 years old

15-19 years old

20-29 years old30-39 years old

40-49 years old

50-59 years ol

60-69 years old

female with lupus

Azathioprine (Imuran) Cyclophosphamide (Cytoxan) Mycophenolate (CellCept) Methotrexate (Rheumatrex) Cyclosporine (Sundimmune, Neoral)


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