Frequently Asked Questions About Lupus

Anyone who’s a fan of the hit TV series “House,” starring Hugh Laurie, knows lupus inevitably came up as a possible diagnosis for the mystery condition of the episode (and they were always wrong, except for that one time).

The show is right about one thing — lupus has a wide variety of symptoms, shows up differently in people and stumps doctors. The condition also tends to mimic many different health conditions, including celiac disease and rheumatoid arthritis.

Lupus affects 1.5 million people in the United States — and 9 in 10 of them are women. Here’s what you need to know about this autoimmune condition.

What is lupus?

Lupus has different forms, but the most common is systemic lupus erythematosus (SLE) — about 7 out of 10 people with lupus have SLE. Lupus is an autoimmune condition, where the body’s immune system attacks itself. It affects various body parts, including the skin, joints, kidneys and brain and is challenging to diagnose because of its wide range of symptoms.

When the body attacks its healthy tissue, it can cause inflammation and sometimes permanent damage to the tissues all over the body.

Who is most at risk for lupus?

Lupus affects women more than men and particularly affects women ages 15 to 44. People of color, including those who are Black or of African American descent, Hispanic, Asian, and Native American, have an increased chance of having lupus.

Lupus can be hereditary. While many people with lupus don’t have other family members with the condition, lupus can be passed down. According to the Lupus Foundation, 1 in 5 people with lupus have a family history of the condition.

What are the common symptoms of lupus?

Common lupus symptoms in women can include:

  • Pain in the joints and muscles
  • Fever
  • Rashes on the body such as a red, butterfly-shaped rash across the cheeks and nose
  • Chest pain when deep breathing
  • Hair loss
  • Sensitivity to light, including sunlight
  • Kidney problems
  • Mouth sores
  • Feeling very tired or fatigued
  • Confusion or forgetfulness
  • Dry eyes, eye swelling and eyelid rashes

What are the early warning signs of lupus?

Early signs of lupus in females can include any of the above, depending on which organs lupus affects. One woman could experience a completely different set of symptoms than another. In general, you might first notice:

  • A butterfly rash, known as lupus rash
  • Joint, muscle or chest pain
  • Headaches
  • Fatigue
  • Mouth sores
  • Fever

What are lupus flares?

Lupus flares are periods when symptoms get worse. Sometimes, flares can be mild, but some people might have more serious ones that need medical attention. You might recognize a flare is coming because you’ll have certain symptoms such as feeling more tired or having pain. You may also get a rash or feel dizzy or nauseous.

What are common triggers for lupus flares?

If you can recognize when a flare might be coming and take steps to get treatment as soon as possible, you may be able to prevent it or at least reduce how serious it is. Some common things that can trigger, or bring on, a lupus flare are:

  • Not resting enough or overworking yourself
  • Spending too much time in the sun or under fluorescent or halogen lights
  • Infection
  • Becoming injured
  • Suddenly stopping your lupus medications
  • Certain medications, including some blood pressure and heart medications

How is lupus diagnosed?

Lupus can be hard to diagnose because the symptoms can often look like other health conditions. It takes an average of six years from the time symptoms start to receiving a diagnosis.

Your healthcare provider (HCP) will ask you about your family and medical history, including what symptoms you’re having and if anyone in your family has an autoimmune condition. They will perform a physical exam, particularly looking for skin rashes and other signs of lupus.

You might have testing done that can help your HCP find a diagnosis. This might include:

  • Antinuclear antibody (ANA) blood test to show if you make lupus antibodies
  • Urine test to check how the kidneys are working
  • Biopsies to remove a small piece of tissue and look at it under a microscope to see if there are signs of autoimmune disease

How is lupus treated?

If you’ve been diagnosed with lupus, your HCP might refer you to a rheumatologist, or a doctor that specializes in autoimmune conditions.

Lupus treatments usually include medications. Some lupus medications are over-the-counter (OTC) and some are prescribed by your HCP. These might include:

  • Anti-inflammatory medications such as ibuprofen to help decrease swelling and joint pain
  • Steroids such as prednisone to help calm the immune system and decrease pain and swelling
  • Antimalarials to help prevent flares and treat symptoms such as rashes, pain and fatigue
  • Biologics (inhibitors of BLyS or type I interferons) to help control parts of the immune system that make lupus active and worsen symptoms
  • Anticoagulants to prevent blood clots

Other ways to manage lupus can include:

  • Protecting your skin from the sun
  • Keeping up with your vaccinations
  • Getting regular health screenings
  • Limiting alcohol and not smoking

Keep your HCP informed of any changes to your symptoms and track any flares and triggers you notice. Remember, lupus can be hard to diagnose, but with the right treatment, you can manage your symptoms and learn to live with your condition.

This educational resource was created with support from Novartis, a HealthyWomen Corporate Advisory Council member.

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