How do I get tested for lupus?

Dear Alice,

Is there free testing for diseases like lupus? It is in my family and I'm scared that I may have it.

Feeling Crummy

Dear Feeling Crummy, 

It’s great that you’re aware of your family history and are looking into the possibility of your own diagnosis. Luckily, there are many options for where and how you can get tested for lupus, including some that provide financial assistance when it comes to payment. Read on for more information! 

Lupus is a chronic, autoimmune disease that affects many body systems, such as the skin, kidneys, brain, heart, lungs, and more. Autoimmune diseases occur when the body attacks healthy tissues instead of just harmful invaders. The most common form is called systemic lupus erythematosus. Some of the other forms are limited to the skin, caused by certain medication use, or neonatal. 

Some people are more likely to get lupus than others. While the cause of lupus is unclear, scientists believe that those with a family history may be more susceptible to it. However, a genetic link alone isn't enough to cause the disease. 

Lupus may be triggered by a number of factors. After lupus has been triggered for the first time, these same factors may lead to the return of symptoms (often called flares). While researchers are still working to understand the exact cause of these triggers, some emerging research points to the following as culprits: 

  • Sunlight 
  • Infections or illness 
  • Medications (such as those for blood pressure, seizures, and some antibiotics) 
  • Environmental factors (such as exposure to ultraviolet light, silica dust, or cigarette smoke) 
  • Hormones 
  • Lifestyle factors (such as stress, exhaustion, and smoking) 

List adapted from Verywell Health and Mayo Clinic 

When the disease is triggered or flares, the person may experience a wide range of symptoms including: 

  • A rash on the face (creating a shape similar to a butterfly over the nose and cheeks) 
  • Shortness of breath 
  • Chest pain 
  • Joint pain or swelling 
  • Headaches 
  • Dry eyes 
  • Fatigue 
  • Skin lesions 

List adapted from Mayo Clinic 

Diagnosing lupus can be challenging because its symptoms closely resemble those of other diseases. A proper diagnosis typically requires a series of diagnostic tests and may take some time. Nevertheless, knowing that it runs in your family and understanding the signs and symptoms may help you and a health care provider detect it sooner. Other risk factors for this condition may include: 

  • Race. Lupus affects Hispanic, Asian, and African American individuals more. 
  • Age. While someone can be diagnosed at any age, it's most common for those between 15 and 45. 
  • Sex. Although it also affects men, lupus is more common among women. 

If you're experiencing any of these symptoms, it can be beneficial to document them and have it available to discuss with a health care provider. Using this information, a health care provider can discuss a course of treatment with you. Oftentimes care for lupus requires the expertise of a rheumatologist—a specialist in joint and muscle diseases. After being diagnosed with lupus by a general practitioner, they may refer you to a rheumatologist to compete treatment. Depending on the symptoms, the rheumatologist may include other health care providers, such as those who specialize in kidneys and treating immune system disorders. While there is no cure for lupus, working with medical professionals that support your condition can help alleviate some of the symptoms and reduce inflammation. Those diagnosed may be prescribed medications including corticosteroids, immunosuppressants, antimalarial drugs, or nonsteroidal anti-inflammatory drugs (NSAIDS such as ibuprofen, aspirin, etc.). Many people with lupus can live long lives with supportive treatment. 

You mentioned being concerned about some of the costs of diagnosis. The Lupus Foundation of America Financial Assistance has a number of resources to determine if you're eligible for financial assistance for testing. There may be free or reduced payment options available to you, depending on your location and insurance coverage. Additionally, this foundation offers other resources that may be beneficial to you, such as access to health education specialists, local support groups, and informational packets. If you're not eligible for their financial assistance through the Lupus Foundation of America, you may be able to speak with a health care provider or their billing office to learn more about options available to you. 

Wishing you the best on your medical journey! 

Last updated Nov 03, 2023
Originally published Sep 30, 1994

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