Life With Lupus

An unpredictable autoimmune disease.

By Kevin RR Williams

HEALTH Imagine if, before going to sleep, we had to calculate how many breaths are required to last through the night. What if our heart would only beat until we got tired, much as our legs might give out when attempting a marathon? How thankful we are for our autonomic nervous system (ANS). It keeps us living without conscious effort. Essential bodily functions like breathing, heartbeat, disease defense, skin healing and food digestion occur automatically.

The autoimmune system works with ANS by helping to protect against harmful substances like bacteria, viruses, toxins, cancer cells, and foreign blood and tissue. For the estimated 1.5 million Americans with autoimmune disorders like lupus, any human tissue can suddenly become the enemy. The battle is with one’s own relentless immune system, which erroneously does not distinguish between healthy tissue and antigens.

Since all organs are fair game, symptoms vary among lupus patients. Premature death results when the target is a vital organ—with heart failure as a common cause. Though patients can live longer, the mean range is in the 40s to 50s.

Related: Skin Eruptions Signal Underlying Disorders

There are some indications that cause medical professionals to suspect lupus. Though lupus has the potential to affect anyone, about 9 out of 10 lupus patients are females aged 15–35. Eighty-five percent will experience skin changes. Nearly half the documented cutaneous lupus patients may manifest the butterfly-mask facial inflammation—a photosensitive malar rash indicative of systemic lupus eythematosus (SLE). Difficult cases are generally thouse outside the statistical norm.

Life With Lupus

Cutaneous Lupus Manifestations

Diagnosis is based on characteristic appearance of the affected area in conjunction with skin biopsy and/or various laboratory and blood tests.

  • Discoid lupus erythematosus is the most common form of LE, and consists of the formation of scaly patches of skin which are red in color, typically on the nose, ears, and/or cheeks.
  • Subacute LE consists of a dry rash on the upper torso, often after exposure to the sun, which does not scar and may present as ring-shaped, nodules, vasculitis, or scaly bumps. The condition and result in pigmentation and scarring of the affected area, and may involve hair follicles, resulting in permanent alopecia in some cases.
  • Lupus tumidus affects the dermis, and is distinctive because of its extreme photosensitivity. It consists of red, swollen bumps or patches, similar to hives, which may be ring-shaped.
  • Lupus profundus affects subcutaneous fat, and may affect anyone, including children, and consists of deep, firm nodules typically on the face, resulting in Lipodystrophy.
  • Neonatal LE affects the newborns of mothers with subacute LE, and consists of a temporary rash of similar nature.
  • Cutaneous lupus mucinosis is rare and typically occurs as a symptom of lupus tumidus, and consists of small bumps, plaques or nodules on the face, torso or upper arms.

Differential Diagnosis (Other conditions with similar appearance)

  • Polyarteritis nodosa
  • Preeclampsia (Toxemia of Pregnancy)
  • Rheumatic Fever
  • Rheumatoid arthritis
  • Scleroderma
  • Serum sickness
  • Thrombotic Thrombocytopenic Purpura
  • Undifferentiated Connective-Tissue Disease
  • Antiphospholipid syndrome
  • Fibromyalgia
  • Hepatitis C
  • Infectious mononucleosis
  • Infective Endocarditis
  • Lyme disease
  • Lymphoma, B-cell
  • Mixed Connective-Tissue Disease

Other Lupus Symptoms

In the absence of the characteristic facial blemish, diagnosis can be delayed. It’s not likely that a doctor will suspect lupus for everyone with fatigue, dry eyes, irregular cardiology, persisent joint pain, digestive or endocrine disorders. A family history of autoimmune disease—not particularly lupus—may alert an astute physician.

Related: Sjögren's Syndrome: Pain Beyond Tears

Symptoms that may go undetected for a time include ulcers within the nose and mouth, extreme headaches, fatigue, persistent low-grade fever, dizziness, chest pain, hair loss, sleep disorders, and internal organ growth or damage. “For most people, it takes months or even years to get diagnosed because the symptoms come and go and don’t clearly point to lupus,” according to Sara Gorman who was diagnosed at 26, in an inteview with Dr. Sanjay Gupta.

For most people, it takes months or even years to get diagnosed.

Gorman’s lupus began more than a dozen years ago with pain that ran from her back to her side. A chest x-ray showed pleural effusion—a buildup of fluid between the layers of lung tissue. Subsequent visits to a pulmonologist and a rheumatologist led to a blood test that showed a high presence of antinuclear antibodies and the diagnosis that she had a “very solid case of lupus.”

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Patients must contend with internal negative emotions and external social ostracization resulting from visible rashes. Extreme fatigue, discribed as an overwhelming inability to function, is also a formidable challenge. Yet, many patients like Gorman overcome the adversities, including entertainters such as Selena Gomez, Lady Gaga, Nick Cannon, Toni Braxton, and Seal.

Diagnosing and Treating Lupus

“It’s a complicated disease, and it’s not easy for people to grasp it,” said Dr. Askanase. “If you’re short of breath, people think you have asthma. If you have a rash, they think you’re allergic to something. But lupus isn’t that simple. We’ve achieved extraordinary things, but we could do better by lupus patients in terms of diagnosis and treatment.” Every case of lupus is different. Askanase points out that joint pain symptoms can be merely annoying or crippling, and the rash can range from rosy cheeks to scaly, inflamed skin. The condition can surface as a one-time episode, come and go with periodic flares, or present chronic symptoms.

Specific blood tests are available to identify markers for the disease. These include antinuclear antibody tests, autoantibody tests, CBC, comprehensive metabolic panel, C‑reactive protein (CRP), erythrocyte sedimentation rate (ESR), and urinalysis.

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October is Lupus Awareness Month. To date, there is no cure for lupus. Symptoms are treated individually with appropriate medications. Supplements are used to replace substances lacking in the body, such as thyroid hormone, vitamin B12, or insulin, due to the autoimmune disease. The goal of cutaneous treatment is to relieve visible symptoms and prevent scarring. Patients with outward manifestations such as the characteristic SLE malar rash, resort to cosmetics to mask appearance. This article provides general information. See a qualified physician for diagnosis and treatment.

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Tags: cardiology, dermatology, dermatitis, fatigue, rare diseases, rash

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