Getting tested for and info about lupus?

Dear Feeling Crummy,

It’s great that you’re aware of your family history and are looking into the possibility of your own diagnosis. Lupus is a chronic, multisystem autoimmune disease that can manifest in many ways, including having generalized symptoms throughout a person’s body, complications with specific organ systems, or can be locally situated in joints or on skin resulting in a facial rash or lesions. Diagnosing lupus is actually pretty tough (symptoms are similar to some other diseases — more on this later) and may entail multiple diagnostic tests. Since a lupus diagnosis is not simply indicated through one laboratory blood test or biopsy, free testing for lupus might be difficult and largely depends on your insurance coverage. However, knowing that it runs in your family and understanding the signs and symptoms may help you and your health care provider detect it sooner.

A bit more about this condition: There are multiple types of lupus, systemic lupus erythematous (SLE) being the most common (more on this type later). Other types include:

• Discoid lupus erythematosus which causes a skin rash that doesn't go away
• Subacute cutaneous lupus erythematosus causes skin sores on parts of the body exposed to sun
• Drug-induced lupus can be caused by medications
• Neonatal lupus a rare type of lupus that affects newborns.

List adapted from the National Institute of Arthritic and Musculoskeletal and Skin Diseases.

SLE predominately occurring in pregnant women and women ages 18 to 35. Lupus confuses the immune system to mistakenly attack the connective tissue of the body as if it were foreign matter, causing inflammation. In addition to being hereditary, lupus may also be linked to hormonal interactions, or may be set off by environmental triggers including stress, exhaustion, sunlight/ultraviolet (UV) radiation, injury, certain drugs and medications, or infections.  

While lupus appears in many variations and symptoms can come and go over time, SLE typically presents as a red, circular thickened area of skin that may leave a scar. Common placement of this rash is on the face, behind the ears, or on the scalp. In addition to the rash, other possible symptoms include nausea, fatigue, fever, painless ulcers inside the mouth or nose, patchy hair loss (but not total baldness), joint pain or swelling, and irritation to the membrane tissue in the chest. However, due to the complexity of lupus, a clear diagnosis is rarely given. Someone may receive a diagnosis of "definite SLE" or "possible SLE," the latter indicating that symptoms may be caused by another rheumatic disease — a disease that affects connective tissue — such as anemia, arthritis, alopecia, fibromyalgia, multiple sclerosis, or leukemia.

Diagnosis of suspected cases will likely entail a full patient history, a physical examination, and diagnostic tests including a skin biopsy and imaging of affected joints or organs. Initial blood and urine tests may be performed to look for normal levels of blood cells and other markers of inflammation and kidney health. While there is no cure for lupus, working with a multidisciplinary group of medical professionals can help alleviate some of the symptoms and reduce inflammation. Those diagnosed may be prescribed medications including corticosteroids, immune system suppressants, or nonsteroidal anti-inflammatory drugs (NSAIDS such as ibuprofen, aspirin, etc.). Treatment can be successful in reducing flare ups of symptoms, but if the kidneys become severely affected by lupus, it can be a life-threatening condition.

If you're concerned that you may have lupus, consulting with your health care provider can help you get some additional information. S/he can review your concerns and determine whether testing or a referral to a specialist is appropriate. To get the most out of your visit, consider keeping a journal of your symptoms, and be prepared to describe specific symptoms and pain levels. Additionally, it can help to come prepared with any previous medical records, and a list of all the medication (prescription and over-the-counter) and dietary supplements you take. Lastly, you might ask your health care provider give a brief summary at the end of the appointment about any testing, medications, or treatment options that were discussed. It may also be helpful to have the support of a friend or family member with you to take in all of the information. To learn even more about this condition, check out the Lupus Foundation of America.