Frequently aked Questions about Lupus (has types of lupus too)

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Frequently Asked Questions About Lupus

1. What is lupus? - What does autoimmune mean? - What is inflammation? - What happens in autoimmune diseases like lupus? - Where did the name come from? - Who gets lupus? - What are the symptoms of lupus?2. Different kinds of lupus3. Can you catch lupus?4. Is lupus a fatal disease? - Death in lupus, what is it due to?5. Cancer - Is lupus a form of cancer? - Are people with lupus more likely to develop cancer? - Cancer treatment in lupus, any special considerations?6. AIDS and lupus, are they alike?7. Lupus anticoagulant - Does the lupus anticoagulant mean I have lupus? - Can you have antiphospholipid antibodies and not lupus? - Can you have antiphospholipid antibodies and not have related symptoms?8. MS and lupus - MRI findings in CNS lupus9. Childhood lupus, prognosis LUPUS OF THE SKIN 10. Symptoms of cutaneous lupus (lupus of the skin, "discoid") - Different types of rashes - Diagnosis - Specialist in lupus of the skin treatment11. Cutaneous (skin) vs systemic lupus12. Hair loss13. Make-up14. Hives and burning sensation15. Photosensitivity DRUG-INDUCED LUPUS 16. Drug-induced lupus CAUSE 17. What causes lupus?18. Is it hereditary? - Where is genetic research being done?19. Can I have my children tested?20. What can trigger lupus? - Is stress related? - Are flares related to hormones? - Are there medications to avoid? - Does it occur more often in certain geographical areas? - Is lupus related to pollution or toxic chemicals? - Does something in the diet cause lupus?21. Silicone breast implants - Any connection with lupus? - If removed, will my symptoms improve?22. Aspartame- artificial sweetener DIAGNOSIS 23. Is there a test for systemic lupus?24. Why is SLE so difficult to diagnose? - How is it diagnosed? - The ANA test - used as a screening test25. Confusion about diagnosis - I have all the symptoms, but the Dr. says it is not lupus! - Early as possible diagnosis - Can anything be prescribed to relieve the pain if I'm not diagnosed - Borderline ANA - Positive ANA, not lupus, but a CONNECTIVE TISSUE disease - Negative ANA, not lupus, can I have lupus and a negative ANA? - What kind of doctor can diagnose lupus? - If I am in the process of developing lupus, can I do anything to slow its development? - Positive ANA and fibromyalgia LIVING WITH LUPUS 26. I have lupus. Are there any do's or don'ts regarding: - Diet - Vitamins - Exercise - Fatigue - Sleep - Medications - Work schedule27. How to recognize a flare - When to call the doctor - Flare, how long will it last? - Persistent flare without a remission28. What can I expect in the future? Will I: - Be able to have a family? - Be able to continue working full-time? - Live long enough to see my children grow up? - Become crippled and end up in a wheelchair? 29. Pain management30. Dental Fillings31. Hair dyes32. Can lupus cause memory problems? TREATMENT 33. Is there a cure for lupus?34. How is lupus treated? - I don't want to go on prednisone. What else can I take? - Weight gain brought on by prednisone? - Herbs and Vitamins? 35. Where is the BEST place to go for diagnosis and treatment? ALTERNATIVE MEDICINE 36. Massage37. Acupuncture38. Alternative treatments RESEARCH 39. Research - Is there any research being done on lupus? - Where is research being done? - Where does the NIAMS lupus research take place? - What do we now know as a result of NIAMS supported research? - Are there any studies on the use of estrogen in lupus? - NIAMS Registries for Lupus and Lupus Related Conditions - NIAMS/NIH budget information - Does the Lupus Foundation of America do research? - How do I find out more about the LFA's Research Grant program? - How close are we to a cure? WORK/INSURANCE/DISABILITY 40. Is lupus included in the Americans with Disabilities Act (ADA)?41. Is there a list of insurance companies that cover lupus?42. Is financial assistance available?43. Social Security Disability - Applying - Definition of disability - Eligibility - Not eligible, what then - Difficulty in getting disability - Denied benefits, what next - Attorneys specializing in disability law If you have questions that are not covered here or elsewhere in this site, Contact LFA

FREQUENTLY ASKED QUESTIONS ABOUT LUPUS1. What is lupus? Lupus is a chronic (long-lasting) autoimmune disease in which the immune system, for unknown reasons, becomes hyperactive and attacks normal tissue. This attack results in inflammation and brings about symptoms. What does autoimmune mean? Literally it means immune activity directed against the self. The immune system fights the body itself (Auto=self). In autoimmune diseases, the immune system makes a mistake and reacts to the body's own tissues. What is inflammation? Literally it means setting on fire. It is a protective process our body uses when tissues are injured. Inflammation helps to eliminate a foreign body or organism (virus, bacteria) and prevent further injury. Signs of inflammation include; swelling, redness, pain and warmth. If the signs of inflammation are long lasting, as they can be in lupus, then damage to the tissues can occur and normal function is impaired. This is why the treatment of lupus is aimed at reducing the inflammation. Reference: see Facts & Overview, What is Lupus? What happens in autoimmune diseases like lupus? The immune system is designed to protect and defend the body from foreign intruders (bacteria, viruses). You can think of it like a security system for your body. It contains several different types of cells, some of which function like "security guards" and are constantly on patrol looking for any foreign invaders. When they spot one, they take action, and eliminate the intruder. In lupus, for some reason and we don't know why, the immune system loses its ability to tell the difference between a foreign intruder and a person's own normal tissues and cells. So, in essence, the "Security Guards" make a mistake, and they mistakenly identify the person's own normal cells as foreign (antigens), and then take action to eliminate them. Part of their response is to bring antibodies to the site that then attach to antigens (anything that the immune system recognizes as non-self or foreign) and form immune complexes. These immune complexes help to set in motion a series of events that result in inflammation at the site. These immune complexes may travel through the circulation (blood) and lodge in distant tissues and cause inflammation there. Where did the name come from?Lupus is the Latin word for wolf. The term has been associated with the disease since the 10th century, though the reasons are unclear. Erythematosus means redness. It is speculated that the name was given to describe the skin lesions (sores), which typically are red and perhaps at that time in history were thought to resemble the bite of a wolf. Today we know that not everyone with lupus has rashes or skin lesions, and those who do would not say their rashes look anything like a wolf bite. Who gets lupus?Lupus can occur at any age, and in either sex. Nine out of ten people with lupus are women. During the childbearing years (ages 15-44) lupus strikes women 10-15 times more frequently than men. People of all races can have lupus; however, African American women have a three times higher incidence (number of new cases) and mortality than Caucasian women. They tend to develop the disease at a younger age and to develop more serious complications. Lupus is also more common in women of Hispanic, Asian, and Native American descent. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) has developed a strategic plan for reducing health disparities. Lupus is included as an area of research focus. Further information on disparities in lupus and the strategic plan is available at: http://www.niams.nih.gov/an/stratplan/stratplan.htmWhat are the symptoms of lupus? Symptoms of lupus vary widely depending on the individual case and the form of lupus present. Most people with lupus do not experience all of these symptoms. The list only serves to alert people to clues that might indicate the presence of lupus in an undiagnosed person.

Achy or swollen joints Persistent fever over 100 degrees Prolonged, extreme fatigue Skin rashes, including a butterfly shaped rash across the cheeks and nose Pain in the chest on deep breathing Anemia Excessive protein in the urine Sensitivity to sun or ultraviolet light Hair loss Abnormal blood clotting problems Fingers turning white and/or blue in the cold Seizures Mouth or nose ulcers lasting longer than two weeks

< Back2. Are there different kinds of lupus? There are four forms of lupus including: Cutaneous lupus erythematosus affects the skin. There are many different types of cutaneous lupus including:

Chronic cutaneous LE (CCLE) which is sometimes called discoid. Subacute cutaneous LE (SCLE), and Acute cutaneous LE (ACLE). See brochure: Skin Disease in Lupus Systemic lupus erythematosus (SLE) attacks multiple systems in the body which may include: the skin, joints, lungs, blood, blood vessels, heart, kidneys, liver, brain and the nervous system.See Facts & Overview: What is Lupus? Drug-induced lupus may develop after taking certain prescription medications. Symptoms generally disappear, within weeks to months, after the drug is discontinued.See brochure: Drug-Induced Lupus Erythematosus Neonatal lupus, a fourth type, is a rare condition. It is not the same thing as SLE. See FAQ 39 - Research.Resource: "Lupus and Pregnancy" by T. Flint Porter, MD, MPH and D. Ware Branch, MD. Lupus News, Vol. 20, No. 5, Winter 2000. Reference: see Facts & Overview, Types of Lupus Lupus in OverlapThe majority of people with lupus have lupus alone. Between five and thirty percent of people with lupus report having overlap symptoms characteristic of one or more connective tissue diseases. There are several well-recognized overlaps that may affect people with lupus including: lupus and rheumatoid arthritis (RA), lupus and myositis, lupus and systemic sclerosis (SSc or scleroderma), lupus and Sjogren's syndrome (SS).Reference: see brochure, Lupus In 'Overlap' With Other Connective Tissue Diseases < Back 3. Is lupus contagious? No, not even through sexual contact. < Back 4. Is lupus a fatal disease