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Lupus: Coping with Lupus - Symptoms, Causes, & Long-Term Management

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Lupus is an inflammatory disease caused by the immune system attacking itself and can affect the joints, skin, kidneys, blood cells, brain, heart, and lungs.

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What is lupus?

Lupus is an inflammatory autoimmune disease that happens when the body's immune system mistakenly attacks its own cells, tissues, and organs. Lupus is also a systemic disease and can affect multiple body systems including the heart, lungs, joints and even skin.

Since lupus can affect multiple organ systems, symptoms can vary significantly from person to person. However, the most common and distinctive sign of lupus is a facial rash across both cheeks that resembles butterfly wings — called a "malar rash" or "butterfly rash." Other symptoms may include fatigue, fever, joint pain, skin lesions, chest pain, shortness of breath, dry eyes, hair loss, and headaches.

Treatments focus on alleviating symptoms through medications and other methods based on your specific needs.

You should visit your primary care physician. There is no one test to diagnose lupus, and it may take months or years to make the diagnosis. There is no cure for lupus, but medicines and lifestyle changes can help control it.

Lupus symptoms

Lupus can be a very difficult condition to diagnose since cases can vary so significantly. Signs and symptoms depend on the affected body systems and may include:

  • Fatigue
  • Fever
  • Joint pain, stiffness, and swelling
  • A butterfly-shaped rash on the face: This covers the cheeks and bridge of the nose.
  • Rashes elsewhere on the body
  • Photosensitivity: Skin lesions will appear or worsen with sun exposure.
  • Raynaud's phenomenon: Fingers and toes will turn white or blue when exposed to cold or during stressful periods.
  • Shortness of breath
  • Chest pain
  • Dry eyes
  • Mouth ulcers
  • Hair loss
  • Headaches, confusion and memory loss

Signs and symptoms can be acute (come on suddenly and quickly) or chronic (develop over a long period). The symptoms above can be mild or severe and occur in episodes called "flares" or remain permanently. Often, new symptoms can appear as well during the course of an individual's lifetime.

Complications

Inflammation caused by lupus can lead to the following complications over time that also need medical care and attention:

  • Kidney damage/failure: Kidney failure is one of the leading causes of death in people with lupus.
  • Vasculitis: Vasculitis is inflammation of the blood vessels.
  • Cardiovascular disease: Lupus can cause inflammation around the muscles and arteries of the heart, increasing heart attacks and other cardiovascular issues.
  • Neurologic disease: Lupus can result in inflammation around the brain and other effects that can result in seizures, behavior changes, headaches, and vision problems.

Lupus quiz

Take a quiz to find out if you have lupus.

Take lupus quiz

Lupus causes

The exact reason for why the body's immune system attacks itself in lupus is unknown. However, studies suggest that a combination of genetics and the environment trigger the development of lupus.

People with an inherited predisposition for lupus or other autoimmune diseases may develop the condition in the setting of environmental triggers such as:

  • Sunlight: Lupus lesions may appear or be triggered by exposure to the sun.
  • Medications: Medications for blood pressure, seizures or antibiotics can trigger lupus.
  • Infections: Bacterial or viral infections can initiate lupus or result in flares.

Who is most likely to be affected

Lupus is most common in women and two to three times more common in African American women than in Caucasian women. Lupus also affects people between the ages of 15 to 45 more than other age groups.

Treatment options and prevention for lupus

There is no cure for lupus, but medicines and lifestyle changes can help control it. You will work closely with your physician and other healthcare professionals to develop a treatment plan that best fits your needs.

Goals of treatment

Goals of a treatment plan include:

  • Preventing flares
  • Treating flares when they occur
  • Reducing organ damage

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Lupus quiz

Take a quiz to find out if you have lupus.

Take lupus quiz

Medical treatments

Your physician may suggest the following medications to help control your symptoms.

  • Pain medications: Over-the-counter non-steroidal anti-inflammatory drugs (NSAIDs) can help with the pain, swelling, and fever associated with lupus.
  • Corticosteroids: These drugs help combat the inflammatory response that occurs when the immune system attacks the body.
  • Immunosuppressants: These drugs suppress the immune system and are most helpful for serious lupus cases.
  • Antimalarial drugs: Medications commonly used to treat malaria, such as hydroxychloroquine (Plaquenil), affect the immune system and can help decrease the risk of lupus flares.

At-home treatments

There are many things you can do at home to prevent lupus flares and better cope with symptoms.

  • Exercise regularly: Exercise can help reduce cardiovascular complications and keep muscles and bones strong.
  • Eat properly: A diet balanced with fruits, vegetables, and grains can help control blood pressure and other complications of lupus.
  • Be smart in the sun: Always wear sunscreen and protective clothing when going outside.

When to seek further consultation for lupus

See your physician if you develop an unexplained rash, ongoing fever, persistent aching, or fatigue.

Questions your doctor may ask to determine lupus

  • Have you been feeling more tired than usual, lethargic or fatigued despite sleeping a normal amount?
  • Do you have trouble sleeping?
  • Any fever today or during the last week?
  • Have you experienced any nausea?
  • How long has your current headache been going on?

Self-diagnose with our free Buoy Assistant if you answer yes on any of these questions.

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The stories shared below are not written by Buoy employees. Buoy does not endorse any of the information in these stories. Whenever you have questions or concerns about a medical condition, you should always contact your doctor or a healthcare provider.
Dr. Rothschild has been a faculty member at Brigham and Women’s Hospital where he is an Associate Professor of Medicine at Harvard Medical School. He currently practices as a hospitalist at Newton Wellesley Hospital. In 1978, Dr. Rothschild received his MD at the Medical College of Wisconsin and trained in internal medicine followed by a fellowship in critical care medicine. He also received an MP...
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References

  1. Maidhof W, Hilas O. Lupus: An overview of the disease and management options. Pharmacy and Therapeutics. 2012;37(4):240-6. NCBI Link
  2. Sontheimer RD. How lupus affects the skin. The National Resource Center on Lupus. Published July 12, 2013. The National Resource Center on Lupus Link
  3. The leading causes of death in lupus. The National Resource Center on Lupus. Published July 18, 2013. The National Resource Center on Lupus Link
  4. Ramos PS, Brown EE, Kimberly RP, Langefeld CD. Genetic factors predisposing to systemic lupus erythematosus and lupus nephritis. Seminars in Nephrology. 2010;30(2):164-176. NCBI Link
  5. Kamen DL. Environmental influences on systemic lupus erythematosus expression. Rheumatic Disease Clinics of North America. 2014;40(3):401-vii. NCBI Link
  6. Lupus facts and statistics. Lupus Foundation of America. Lupus Foundation of America Link
  7. Lupus. Mayo Clinic. Published October 25, 2017. Mayo Clinic Link
  8. Treating lupus with anti-malarial drugs. The John Hopkins Lupus Center. The John Hopkins Lupus Center Link
  9. Living with lupus. Lupus Foundation of America. Lupus Foundation of America Link