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Conquer Lupus

What is Lupus?

Headshot of a lupus patient with facial rash looking straight at the camera

Learn About Lupus

Lupus is an autoimmune disease, meaning it occurs when the body's immune system attacks its own tissues and organs. This condition causes tissue damage and inflammation, which can affect several body systems such as joints, kidneys, eyes, skin, heart, brain, lungs, and blood cells. The exact cause of lupus is unknown, although substantial evidence suggests it is influenced by both genetic and environmental factors. Ranging from mild to severe, lupus symptoms can also be triggered by infection, certain medications, smoking, or sunlight, and may flare up at times or disappear temporarily. Symptoms may also change over time with no clear pattern. Lupus is more common among women and those who are African American or Black.

Symptoms include:

  • Fatigue
  • Swollen, painful or stiff joints
  • Skin rash
  • Chest pain when breathing in or laying down
  • Fingers or toes that turn white, red, or blue in cold or during periods of stress
  • Memory loss, dizziness, confusion, or seizures
  • Headaches
  • Dry eyes
  • Hair Loss
  • Sores in the nose or mouth
  • Swelling around eyes or legs
  • Depression
  • Fevers

Learn more about lupus symptoms.

Lupus Flares

Lupus symptoms can change over time and sometimes can be unpredictable. A lupus flare involves a worsening of symptoms related to lupus.

Use this outline to create a lupus flare plan to address your symptoms before they occur.

Recognize symptoms of a flare

  • The symptoms you had when you were first diagnosed with lupus will often repeat during flares. Use the prior section as reference. Make a list of these symptoms.
  • A new symptom or fever may be related to lupus or something else (like an infection or medication side effect). Talk to your doctor right away to help sort this out.

Seek medical care

  • Gather your doctor’s contact information now. Put it on your fridge and in your phone. Know what phone numbers to use between appointments and ask what to expect when you call. For example:
    • Does your doctor have a nurse you will speak with first?
    • How quickly should you hear back?
    • Do they have a 24-hour emergency call line?
  • Some clinics have online messaging. Ask how long it takes for these messages to be addressed. Phone calls may have a quicker response in more urgent situations.
  • Ask your doctor if they need to see you immediately during your flare.
    • If yes, what should you say to the receptionist or scheduler to make sure you are seen urgently?
    • What should you do if you are told the next appointment is several weeks away?
  • Should you have blood and urine tests during every flare?
    • If yes, what procedure should you follow to have these tests ordered and done quickly?
    • How will you find out the results?

What to do at home to help

  • Create a plan with your doctor to determine safe steps to address your symptoms. This may include using heat or ice, steroid creams or pills, over the counter pain medications, and resting. These examples may not be safe for everyone, so be sure to have a conversation with your doctor before trying this at home.

What Triggered the Flare?

It may be helpful to consider exposures in the two weeks prior to your flare so you can avoid future triggers. Explore the Understanding Triggers Self Care Module to learn more.

Problems That Need Immediate Medical Attention

You should seek urgent medical attention at an emergency room for the following symptoms:

  • Numbness or weakness of part of your body or your face, difficulty talking, confusion, clumsiness, or vision problems. These symptoms could be from a stroke.
  • Fever of greater than 100.5. Chills or shaking ("rigors") may also be signs of infection.
  • New chest pain or shortness of breath.
  • Swelling, pain, and sometimes redness in the calf. This may represent a blood clot.
  • New severe headache. This is particularly concerning if you also are vomiting, have a fever, or any weakness or numbness.
  • Severe abdominal pain, stool that is black or bloody.

Medical Treatments

Lupus can affect the body in many different ways. There are many different medications used to address these different symptoms and problems.

For the most up-to-date information, this website provides an overview of the different types of medications, their uses, and most common side effects.

Steroids (also known as prednisone or methylprednisolone) are a common medication used to treat inflammation from Lupus. They are fast acting and effective options to reduce symptoms and prevent damage caused by lupus. It is important to balance the benefits of these medications with their side effects. Steroids are associated with an increased risk of infection, weight gain, bruising, stretch marks, high blood pressure, osteoporosis (thin bones), depression, glaucoma (high eye pressure) and cataracts. If you take a medication called hydroxychloroquine (Plaquenil®) for your lupus, you will see an ophthalmologist for regular eye exams to be sure the drug is not causing harm to the eye.

Vaccinations

Many vaccinations are recommended for people with lupus. Some vaccines work best if given before immunosuppressive drugs are started. Others may need to be timed in a certain way with your medications, but many are safe and effective in lupus patients even when on therapy. Safe vaccines include:

  • The flu shot (ask for the injection and avoid the nasal spray)
  • Pneumonia vaccine
  • Human papillomavirus (HPV) vaccine
  • Tetanus, diphtheria and acellular pertussis Td/Tdap) vaccine
  • Shingrix, the non-live recombinant herpes zoster (Shingles) vaccine
  • COVID-19 vaccinations
    • The American College of Rheumatology recommends that immunocompromised people receive mRNA vaccines instead of the Johnson & Johnson vaccine.
    • Data has shown the risk of triggering a lupus flare from the vaccine is very low.
    • Most people with lupus gain good protection from the vaccine, although those taking very high doses of steroids or rituximab may gain less protection.
    • See https://www.lupus.org/resources/covid19-vaccine-and-lupus for up to date information on COVID-19 vaccines for people with lupus.

Live vaccines may be harmful to people who are immunosuppressed. These include:

  • The flu nasal spray
  • Zostavax, the live herpes zoster (Shingles) vaccine
  • Varicella (chickenpox) vaccine
  • Measles, mumps and rubella (MMR) vaccine

Talk to your doctor about what vaccines are recommended for you.

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