Dr. M.J. Bazos, MD Patient Handout


About Your Diagnosis
Dermatitis herpetiformis is a chronic, recurrent skin disorder characterized by clusters of itchy, small vesicles (blisters) and papules (red bumps). The specific cause is unknown. It is likely autoimmune (i.e., a condition in which your immune system mistakenly attacks normal parts of the body, resulting in tissue injury or disease). Dermatitis herpetiformis is uncommon. It typically affects adults between 20 and 60 years of age, although it may erupt in children. It occurs in males twice as often as in females. This condition is hereditary but not infectious or cancerous. Other members of your family may have a history of dermatitis herpetiformis. Hot, humid weather may trigger an eruption of the skin lesions. Some individuals with this condition have gluten sensitivity and celiac disease, genetic disorders of
the small intestine in which an individual cannot normally digest gluten, a major protein in wheat. Diagnosis is usually based upon the appearance of the skin lesions. Your doctor may perform a skin biopsy (i.e., removal of a small piece of skin or other tissue) for laboratory evaluation to assist in diagnosis. Your doctor may also order blood tests to check for certain immune markers that may aid in the diagnosis. Dermatitis herpetiformis is a chronic condition in which episodes may persist for days, weeks, months, or even years. Periods of remission occur between episodes. Treatment can control symptoms and may lessen the severity and duration of the skin lesions, but does not cure the disease.

Living With Your Diagnosis
Skin lesions are very itchy and may occasionally cause a burning or stinging sensation. Lesions appear as clusters of blisters that are typically symmetric (i.e., develop simultaneously in similar patterns on both sides of your body). Scratching the lesions can cause abrasions, crusting, and secondary bacterial infections. Lesions typically involve the scalp, face, elbows, forearms, knees, shoulder blades, lower back, and buttocks. Scratching may cause secondary bacterial infections requiring antibiotic therapy. After healing, the skin may show spots of darker pigmentation. If you also have celiac disease (see above), you may or may not have symptoms. Symptoms include diarrhea, weight loss, fatigue, and abdominal gas, which can cause cramping and bloating. Diagnosis of celiac disease usually requires a biopsy of the small intestine and blood tests for immune markers. You may also experience social embarrassment because of your skin’s appearance.

Specific treatment of dermatitis herpetiformis depends upon its location and severity, the impact it has on the quality of your life, and your response to therapy. Treatment lessens the severity of your condition and prevents complications, but it does not cure dermatitis herpetiformis. Treatment includes the avoidance of precipitating factors, general measures, and medications.
General measures include:
• Cool-water soaks to soothe irritation and decrease itching.
• Restricting gluten in your diet, which can suppress dermatitis herpetiformis or may allow you to decrease the dosage of your medication. Your doctor may prescribe a variety of medications to reduce inflammation, improve symptoms such as itching, and lessen the severity and duration of your dermatitis herpetiformis. These medications include:
• Topical steroid creams, lotions, and ointments to reduce inflammation. These medications are effective. Exercise caution when using topical steroids because they may be absorbed through your skin into your bloodstream and cause toxic effects.
• Calamine lotion and similar agents can reduce itching and irritation.
• Antihistamines reduce itching and may allow you to rest more easily. They may cause drowsiness, so use these agents cautiously when driving or performing other activities in which you must be awake and alert.
• Dapsone or sulfapyridine may be prescribed to reduce skin eruptions and blistering. You will probably need to take one or both of these agents for an extended time. Your doctor will likely monitor for side effects by checking periodic blood tests. Side effects include hemolytic anemia, peripheral neuropathy (tingling, numbness, or loss of feeling), muscle weakness, and liver toxicity.

The DOs
• Take medications as prescribed by your doctor. Inform your doctor of all other medications, including over-the-counter medicines, that you are now taking. Continue these medications unless your doctor instructs you to stop them.
• Read the labels of medicines and follow all instructions. Consult your doctor if you have any concerns or if you have side effects caused by the medication.
• Eliminating or restricting gluten in your diet may improve your condition or may allow you to reduce the dosage of medications used to treat dermatitis herpetiformis.
• Avoid activities that cause overheating and excessive sweating or moisture. If you perform activities that result in excessive moisture, immediately shower and cleanse the skin lesions.
• Maintain good skin hygiene to reduce the risk of secondary bacterial infection.
• Keep scheduled follow-up appointments with your doctor. They are essential to monitor your condition, your response to therapy, and to screen for possible side effects of treatment.
• Monitor your skin for healing and for evidence of secondary bacterial infection. Signs and symptoms of infection include redness around the skin lesions, purulent discharge (pus), increased pain or swelling of the skin lesions or lymph nodes, and fever.
• Frequently wash clothing, towels, and linens as skin lesions are oozing, crusting, or may be infected. This action reduces the risk of transmission of infection.

The DON’Ts
• Do not stop your medicine or change the prescribed dose without consulting your doctor. Do not exceed recommended doses of medicines, because higher doses may increase your risk of toxic effects.
• Do not use potent topical steroids on the face or genitals because these areas are most prone to skin injury and atrophy (thinning and wasting of the skin associated with wrinkling and abnormal, small blood vessels).
• Do not drive or perform other potentially hazardous activities when taking medication that can cause drowsiness or sedation (e.g., antihistamines).
• Avoid activities that can cause overheating, sweating, or excessive moisture, because these conditions can trigger or aggravate your dermatitis herpetiformis.
• Avoid activities that can cause infection of the skin lesions.

When to Call Your Doctor
• If any signs or symptoms of infection develop (see above).
• If you notice that lesions are becoming worse or if new lesions appear despite appropriate therapy.
• If new or unexplained symptoms develop that may indicate a complication of your condition or a side effect of treatment.