Systemic lupus erythematosus (SLE) is an autoimmune disease which can affect adults and children of all ages. The most common time period where the disease begins is in child-bearing females. SLE occurs in all races although can vary in how severe it is. Certain ethnicities may have increased risk of more serious disease such as people of Indigenous, Asian and Hispanic descent. The elderly and men can also get the disease as well. There are many excellent resources which provide detailed information about lupus and what it is.
Here are some general facts to help you understand what lupus is and what it is not.
Cause of Lupus
The cause is lupus is unclear. Currently, it is felt to be a disease where the immune system decides to attack itself because of changes in how the immune system functions. Possible tiggers include the following: environmental exposures (eg. smoking, silica dust, ultraviolet light and viral infections, genetics (eg. specific changes in the genes). Many researchers wonder if it’s a combination of the two – meaning a background change in someone’s genetics who then gets exposed to one or more environmental triggers.
What LUPUS is NOT
Lupus has not been proven to be caused by vaccinations or something that you ate. It is NOT an infection so is NOT contagious. It is NOT a malignancy or cancer.
Diagnosing lupus
Two people can be diagnosed with lupus and never have the same signs and symptoms. That is why it is often called the disease of 1000 faces. Many people can also have signs and symptoms which are also seen in other diseases which means that the disease can be misdiagnosed as something else. The opposite can also be true – people can be incorrectly diagnosed with lupus when they actually have something else. The best way to clarify the diagnosis and develop a good treatment plan is to see a physician with specific experience in diagnosing and managing lupus, which typically is a rheumatologist or immunologist. Sometimes, if the lupus is just isolated to one area (eg. skin or kidney), you might see only a specialist who manages the affected area (eg. dermatologist (skin specialist) or nephrologist (kidney specialist).
Common signs and symptoms of lupus
There is NO single blood test that will diagnose lupus.
Common signs and symptoms of lupus include:
- Pain and stiffness in the small joints of the hands or feet which improves as the day goes on
- Different types of skin rashes which can be triggered or worsened with sun exposure
- Painless sores in the mouth or nose
- Change in the colour of the fingertips when exposed to cold (eg. Raynaud’s phenomenon)
- Very dry eyes and very dry mouth
- Pain when you breath or lie flat (eg. inflammation in the lining of the lungs or around the heart)
Common tests to diagnose and monitor lupus
Blood tests are important if lupus is suspected and for following disease activity. They provide a lot of helpful information. For example, blood and urine tests make sure that the kidneys are working properly. The complete blood count looks at the types of red and white blood cells as well as the platelet count. In some people with lupus, these counts can be affected by lupus disease activity.
The antinuclear antibody test (ANA) is a special antibody test which is usually positive in people with lupus. The problem with the test is that many people can be positive for this test and NOT have lupus. Other types of antibodies are often ordered to either help with the diagnosis or monitor the activity of lupus overtime. This requires specific expertise by a lupus healthcare provider.
Common symptoms which can be seen in lupus but do NOT help the diagnosis
Many people with active disease are tired. They may feel blue or anxious because of their disease activity and the change that has happened in their lives. People might experience more frequent headaches (eg. migraines) or increased pain all over the body. Sometimes it is confusing to tell if these are part of the lupus disease specifically, indirectly or unrelated. The lupus healthcare provider can help tell the difference and help find strategies to address these additional worries.