One Patient's Positive Perspectives

Coping with Lupus:  There are four distinct forms of lupus.  Systemic lupus is the most common type of lupus.  The other three forms of lupus are cutaneous, drug-induced and neonatal.  Drug-induced lupus and neonatal are not a sustained lupus, but systemic and cutaneous lupus are auto-immune conditions that tend to stay with a patient throughout their life, since there is no known cure yet for the latter two forms of lupus.

  1. Systemic lupus – organ and non-organ threatening
  2. Cutaneous lupus – non-systemic discoid lupus
  3. Drug-induced lupus – caused by certain medications known to produce temporary lupus
  4. Neonatal lupus – affecting newborns born to mothers with lupus

Distribution of Forms of Lupus

The percentages for the different types of lupus came from statistics provided by the Lupus Foundation of America in an article on lupus demographics.  I used the data LFA supplied to develop the following pie chart, to show the distribution of lupus types.  Two subgroups of systemic lupus are shown for the 50% of systemic lupus patients with major organ involvement in their lupus, and the remaining 50% who have milder forms of the disease.

Some patients with non-systemic discoid/cutaneous lupus see their lupus develop into systemic lupus.  This only happens in a percentage of patients who start out with cutaneous lupus.

The NAIMS online publication, Lupus: A Patient Care Guide for Nurses and Other Health Professionals, outlines how systemic lupus can affect any organ system of the body.

General Manifestations

  • Fatigue
  • Fever
  • Psychological effects
  • Emotional effects

Specific Manifestations

  • Dermatological: butterfly rash, photosensitivity, Discoid LE, subcutaneous LE, mucosal ulcers, alopecia, bruising
  • Musculoskeletal: arthralgias, arthritis, other joint complications
  • Hematological: anemia, decreased white blood cell (WBC) count, thrombocytopenia, lupus anticoagulants, false-positive venereal disease research laboratory test (VDRL), elevated erythrocyte sedimentation rate (ESR), lymphopenia
  • Cardiopulmonary: pericarditis, myocarditis, myocardial infarction, vasculitis, pleurisy, valvular heart disease
  • Renal: asymptomatic microscopic renal involvement, renal failure, fluid and electrolyte imbalance, edema
  • Central Nervous System (CNS): cranial neuropathies, cognitive impairment, mental changes, seizures, stroke, peripheral neuropathy, meningitis, coma, psychosis
  • Gastrointestinal (GI): anorexia, ascites, pancreatitis, mesenteric or intestinal vasculitis
  • Ophthalmologic: cytoid bodies, dry eyes

Other Key Issues

  • Pregnancy: lupus flare, miscarriage or stillbirth, pregnancy-induced hypertension, neonatal lupus
  • Infection: increased risk of respiratory tract, urinary tract, and skin infections; opportunistic infections
  • Nutrition: weight changes, poor diet, appetite loss

Symptoms change with some constants

Lupus potentially can affect every patient differently, and from time to time differently in each patient.  My systemic lupus has shown the following manifestations from the above lists: fatigue, fever, emotional and psychological effects, butterfly rash, photosensitivity, discoid LE, mucosal ulcers, alopecia, bruising, arthralgia, arthritis, anemia, pleurisy, edema, cranial neuropathy, cognitive impairment, peripheral neuropathy, and dry eyes.  Few of these manifestations have been present at the same time.  The only constants are fatigue, photosensitivity, mucosal ulcers, arthritis, cognitive impairment, peripheral neuropathy and dry eyes.  All other symptoms come and go.


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