Lupus Site - a guide for lupus patients and their families

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.

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.

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 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.

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 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 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.

What 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 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.

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