About Lupus

Common Questions About Lupus

Every week, the S.L.E. Lupus Foundation receives hundreds of phone calls from lupus patients and their families and friends from around the world.

Below are replies to 20 frequently asked questions about lupus. If you have further questions, you're invited to phone us toll-free at 800.74.LUPUS (800.745.8787) during regular business hours Monday through Friday or email lupus@lupusny.org.

  1. How did I get lupus?
    The cause of lupus remains unknown. It is believed that lupus has a genetic pre-disposition and something in the environment triggers the onset of the disease.
  2. Is lupus contagious? Can you get it from sex?
    Lupus is not contagious. It cannot be transmitted sexually.
  3. Is lupus a woman's disease? Do men and children get lupus?
    Yes, lupus is mainly a woman's disease, although men can have lupus. The ratio of women to men is 9 to 1, or 90%. Before puberty, boys and girls have the same ratio; that is 1 to 1.
  4. What are the symptoms of lupus?

    Common symptoms of lupus are:

    • Unexplained fever
    • Extreme fatigue
    • Painful or swollen joints
    • Red rash or color change on the face
    • Chest pain upon deep breathing
    • Unusual hair loss
    • Pale or purple fingers or toes from cold or stress (Raynaud's Phenomenon)
    • Sensitivity to the sun
    • Swelling (edema) in legs or around eyes, etc.
    • Swollen glands

    These symptoms can come or go, and can range from mild to severe. Most lupus patients have a combination of symptoms.

  5. I have a lot of lupus-type symptoms. Where can I go to get diagnosed?
    Many hospitals have rheumatology clinics, or your primary care doctor can order specific laboratory tests for lupus.
  6. I have all/most of the lupus symptoms, but my ANA is negative. Could I still have lupus?
    95% of people diagnosed with lupus have positive ANAs. There are other blood tests more specific to people with lupus that can be used in some instances.
  7. Can I have children if I have lupus?
    Twenty years ago the answer would have been "no." But today, successful pregnancy and childbirth are possible. It is wise for lupus patients to be in the care of a high-risk ob/gyn.
  8. How long can I live with lupus?
    Most people with lupus can live a normal life span if they are properly treated, follow their doctor's advice, and lead a healthy lifestyle.
  9. Is lupus a progressive disease?
    Not necessarily. With proper treatment, lupus is usually manageable.
  10. Is lupus hereditary?
    Heredity does seem to play a role. Ten percent of lupus patients have a first-degree relative (sister, daughter, son, mother) or a second-degree relative (aunt, uncle, first cousin) with lupus. Therefore, 90 percent of lupus patients DO NOT have relatives with lupus. Even in identical twins, when one sibling has lupus and the other twin does not, it is believed there are environmental factors that play an important role. 
  11. Do some groups of people get lupus more often than others?
    Lupus primarily affects young women, and the disease often starts between the ages of 15 and 44.

    People of all ethnicities may get lupus. Lupus is more prevalent in African-American, Latino, Asian, and Native American women than in Caucasian women. 

  12. Can the S.L.E. Lupus Foundation refer me to a lupus specialist?
    Yes, we can refer you to a rheumatologist, a specialist who diagnoses and treats lupus. Just call the Foundation at 800.74.LUPUS (800.745.8787).
  13. Will the prescription drug Plaquenil cause me to lose my eyesight after a while?
    No. Have your eyes checked for a "baseline test" prior to Plaquenil use, and twice a year thereafter. If there is a change in your vision, such as blurriness, immediately contact an opthalmologist.
  14. Does the S.L.E. Lupus Foundation have information about specific medications?
    Yes. The S.L.E. Lupus Foundation has information about medications prescribed for lupus, but it is best to consult a physician.
  15. I have lupus, but have no money. Where can I get medical help?
    City hospitals and most other hospitals can test and treat you on a sliding fee scale.
  16. Where can I get my medications? I don't have enough money to buy them.
    Let your physician know that you are unable to purchase your prescriptions. He/she can contact the PhRMA organization for prescription drug patient assistance programs. Some patients are eligible for Medicaid as well. 
  17. As a diagnosed lupus patient, am I eligible for disability?
    If your physician believes you are unable to do any "substantial gainful employment," that is, unable to earn $740 a month due to physical, mental, or emotional illness, then you are eligible for disability. 
  18. I have SSD (Social Security Disability), but I think I could go back to work. Will I lose my benefits and my Medicare?
    No. SSD allows you a nine-month trial work period where there is no limit as to income earned. This trial period is not necessarily nine consecutive months. There is hope that Medicare will be continued after this trial period.
  19. Is there a special diet for people with lupus?
    No. However, eating plenty of fresh fruits and vegetables, eating chicken and fish over red meat, and drinking plenty of water are all highly recommended.
  20. How can I help advance research and drug development?
    As a person with lupus, you can directly help in advancing lupus science—and simultaneously help yourself—by participating in a clinical trial. A clinical trial is a research project that evaluates the safety and effectiveness of medical treatments, drugs, or devices in human beings. The Food and Drug Administration (FDA) requires that such trials be performed before a product can be prescribed to patients. For information on clinical trials in lupus, try visiting the following websites: www.clinicaltrials.gov; www.LupusResearchInstitute.com; www.LupusTrials.org.