Below are replies to some frequently asked questions about lupus. If you have further questions, we encourage you to call us at (310) 657-5667. Please note that these are general answers and you should always consult with your doctor for your specific medical questions.
- 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.
- Is lupus contagious? Can you get it from sex?
Lupus is not contagious. It cannot be transmitted sexually.
- Is lupus a woman’s disease? Do men and children get lupus?
The majority of people with lupus—90%—are female; however, men and children are also diagnosed with lupus.
- 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.
- 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, or refer you to a rheumatologist.
- 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.
- Can I have children if I have lupus?
Successful pregnancy and childbirth are possible. It is wise for lupus patients to be in the care of an OB/GYN who is familiar with caring for patients with lupus.
- 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.
- Is lupus a progressive disease?
Not necessarily. With proper treatment, lupus is usually manageable.
- 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, most 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.
- 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.
- Can Lupus LA refer me to a lupus specialist?
Yes, we can refer you to a rheumatologist, a specialist who diagnoses and treats lupus. Please call us at (310) 657-5667.
- Will the prescription drug Plaquenil cause me to lose my eyesight after a while?
It is important to have your eyes checked for a “baseline test” prior to Plaquenil use and once a year thereafter. If there is a change in your vision, such as blurriness, immediately contact an ophthalmologist.
- Does Lupus LA have information about specific medications?
Yes. Lupus LA has information about medications prescribed for lupus, but it is best to consult a physician.
- I have lupus, but have no money. Where can I get medical help?
City hospitals and some other hospitals can test and treat you on a sliding fee scale. You can also call (800) 300-1506 to learn more about Medi-Cal and other services for which you may qualify. In addition, you can try to participate in clinical trials which can lead to free care. To learn more about clinical trials, click here.
- 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. Your physician can contact the PhRMA organization for prescription drug patient assistance programs. You may also be eligible for Medi-Cal and can call (800) 300-1506 for more information. Additionally, if you are a resident of the Greater Los Angeles area and are diagnosed with lupus, you can apply for an Emergency Grant. Please click here for more information.
- As a diagnosed lupus patient, am I eligible for disability?
Social Security pays disability benefits for people who have worked long enough and have a medical condition that has prevented them from working or is expected to prevent them from working for at least 12 months. For more questions about disability, please call (800) 772-1213 or visit http://www.socialsecurity.gov/disabilityfacts/.
- Can Lupus LA help me financially?
We have a Lupus LA Emergency Grant Program to help Greater Los Angeles area residents (diagnosed with lupus) in crisis situations. Please click here for more information.
- I have SSD (Social Security Disability), but I think I could go back to work. Will I lose my benefits and my Medicare?
Social Security’s work incentives and Ticket to Work programs can help you if you’re interested in working. There is a trial work period available that would allow you to test your ability to work. For more information, please call (866) 968-7842 or visit http://www.socialsecurity.gov/work/.
- Is there a special diet for people with lupus?
There is no special diet recommendation specifically for people with lupus. However, eating plenty of fresh fruits and vegetables, having healthy meals, and drinking plenty of water are all highly recommended.