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Systemic Lupus Erythematosus - Frequently Asked Questions

Rheumatology Division, Hospital for Special Surgery


What kinds of lupus are there?

Lupus has several forms:

  • systemic lupus erythematosus (SLE);
  • discoid lupus (scarring rash only) and subacute cutaneous lupus, in which rash also predominates;
  • drug-induced, which is relatively rare, may be triggered by such drugs as hydralazine and procaine amide;
  • neonatal lupus, which occurs in infants of women with specific blood test abnormalities.


What are the symptoms of SLE?

The classical patient with lupus is easy to recognize: a young woman with fever, swollen lymph glands, butterfly-shaped rash on her face, symmetrical small joint arthritis, hair loss, chest pain, and protein in the urine. However, most patients have symptoms in only one or two body areas at onset. In order of frequency, the common signs and symptoms of lupus are:

  • Arthritis;
  • Malaise, fatigue, low grade fevers (sometimes high fever), and weight loss;
  • Rashes, which characteristically involve the shawl area and backs of the upper arms, the finger pulps, and the base of nails, as well as facial rash, often in response to sunlight;
  • Hair loss is common.
  • Kidney (renal) disease;
  • Blood (hematologic) disorders, such as hemolytic anemia, leukopenia, lymphopenia, or thromobocytopenia;
  • Chest pains due to pleuritis or pericarditis;
  • Abdominal pain;
  • Headache, mood disorder, confusion, psychosis, seizure, and stroke.
  • Immunologic disorder (antibodies against your own cells, including anti-dsDNA. anti-Sm, or antiphospholipid antibodies (anticardiolipin, lupus anticoagulant, or false positive test for syphilis); positive ANA;
  • Photosensitivity, in which you become ill (not just rash) after sun exposure, which requires use of a high-grade sunscreen;
  • Small, painless ulcers in the mouth and nose.

In addition to discussing these and other symptoms with you, the physician will order a variety of tests to confirm a diagnosis of lupus. These may include blood, urine, and biochemical tests.


Does the course of SLE vary?

Yes. Patients with SLE follow three types of courses: chronic active, relapsing-remitting, and long-remitting. The chronic active form is most common, accounting for about half of patient-years. Severity of lupus varies from mild to life-threatening. Kidney and neurologic disease worsen an individual patient's prognosis more than do arthritis, rash, or other organ pathology. Ten-year survival of all patients is more than 80%, but disabilities are common. Although flares of lupus in individual patients tend to repeat themselves - a patient whose prior flares have been characterized by arthritis and rash is likely to have similar future flares - the disease does change over time. Patients after many years of disease develop hypertension, accelerated atherosclerosis, heart and lung disease, renal failure, and osteoporosis and other complications of therapy. Patients with antiphospholipid antibody develop blood clots and valvular heart disease.


How is SLE treated?

Depending on your symptoms, blood test results, and what organs are involved, you may receive one or more of the following: non-steroidal anti-inflammatory drugs (NSAIDs); COX-2 inhibitors, such as rofecoxib (Vioxx) or celecoxib (Celebrex); hydroxychloroquine (Palquenil), also known as an antimalarial drug; corticosteroids, such as prednisone and methylprednisolone (Medrol), by mouth, injection, or intravenously; immunosuppressive drugs such as azathioprine (Imuran), methotrexate (Rheumatrex), cyclosporine (Sandimmune, Neoral), and mycophenolate mofetil (Cellcept), Cyclophosphamide (Cytoxan), some of which also may be given by injection or intravenously. Further, if you have problems with blood clots, you may need to take aspirin, warfarin (Coumadin) , heparin, or low molecular weight heparin (Lovenox or Fragmin). In addition, when appropriate, experimental therapies may be available.


Can women with lupus have healthy pregnancies?

Pregnancy is possible in most patients with lupus. Complications are frequent; all patients must be considered high risk. In pregnancy or planned pregnancy, referral for specialty care is always appropriate. Patients with antiphospholipid antibody are at risk for pregnancy loss; patients with anti-Ro/SSA and anti-La/SSB antibodies are at risk for delivering a child with neonatal lupus.


If kidney failure occurs, is recovery possible?

Despite advances in therapy, lupus nephritis causes renal failure in a minority of patients. Of those entering dialysis during acute flare, one-third will be able to discontinue dialysis within the first year. The remaining two-thirds, and those suffering gradual deterioration of renal function over several years, do not recover; they tolerate dialysis and kidney transplantation well.


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