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3 Steps to Take After a Lupus Diagnosis

What you need to know about setting treatment goals, finding support, and patient education.

Medically reviewed in January 2021

Being diagnosed with lupus can feel overwhelming. There is no cure for this autoimmune disease and managing the condition is a lifelong process.

Here we look at the process of getting a diagnosis of lupus and what comes after.

Getting a lupus diagnosis
Because there is no single test that can diagnose lupus, the process will involve eliminating other potential causes of the symptoms. This process is known as a “diagnosis of exclusion” and is used with other disorders, such as chronic fatigue syndrome and fibromyalgia.

A healthcare provider will conduct a physical exam and collect information about symptoms, your medical history, and your family’s medical history. There are also a number of diagnostic tests that may be ordered to help rule out other diseases and confirm a lupus diagnosis. These may include blood tests, urinalysis, biopsies of skin and kidney tissue, and multiple antibody tests, including an antinuclear antibody test (which measures the presence of antibodies, which indicate immune system activity).

A lupus diagnosis may start with your primary care physician and will also involve a rheumatologist, a healthcare provider who specializes in the treatment of musculoskeletal disease and autoimmune disease. A rheumatologist will also oversee treatment after a diagnosis.

Establish a treatment plan
Lupus is managed with lifestyle changes and medications. Medications that treat lupus work by reducing inflammation, relieving pain, reducing disease activity, and controlling immune system activity. Lifestyle changes may include avoiding things that worsen symptoms, and may include avoiding exposure to sunlight, reducing stress, exercising regularly, quitting smoking, and making changes to what you eat.

Because there are different types of lupus and severity can vary from very mild to very severe, treatment requires an individualized approach. The main goals of treating lupus are to:

  • Relieve symptoms and inflammation caused by lupus and keep them under control
  • Prevent lupus flares (episodes where symptoms get worse), and have a plan in place for when flares occur
  • Minimize the damage that lupus can cause to organs, such as the liver, kidneys, heart, and lungs

Talk to your healthcare provider about the treatment strategies that can best help you meet these goals.

Learn about lupus
Patient education is an important aspect of managing a chronic condition like lupus, and people with lupus should learn as much as they can about both the condition and their specific diagnosis. Remember, your best source of information about your lupus is your healthcare providers—the disease is a different experience for everyone, and no two diagnoses are exactly alike. Ask your healthcare providers if they have any recommended reading or materials about lupus that you can take with you.

Find support
Living with a chronic condition is challenging, and social support is another important aspect of managing lupus. While friends and family can be a valuable source of support, you may also find it helpful to connect with other people who are living with lupus—after all, the only people who truly know what the experience is like are other people who are also managing the condition. Consider joining a support group, either one that meets in person or one that connects online.

Sources:
American Academy of Family Physicians. "Patient Education: Lupus."
UpToDate. "Patient education: Systemic lupus erythematosus (Beyond the Basics)."
Johns Hopkins Lupus Center. "How is lupus diagnosed?"
Lupus Foundation of America. "Understanding the genetics of lupus."
Lupus Foundation of America. "Lab tests for lupus."
S. Sam Lim. "Lupus: The Role of the Primary Care Physician. Part 1: Diagnosis." Rheumatology Network. October 3, 2012.
American College of Rheumatology. "What is  Rheumatologist?"
Lupus Foundation of America. "Medications used to treat lupus."
Lupus Foundation of America. "Finding the treatment approach for you."
"Study finds 45 minutes of patient education improves chronic disease management." Associated Press. November 19, 2018.
Centers for Disease Control and Prevention. "Managing Lupus."
Renee Bacher. "Do a Lack of Information & Social Support Affect Lupus Outcomes?" The Rheumatologist. September 17, 2019.
Lupus Foundation of America. "Find support near you."

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