Itching is common in EB and can interfere with the ability to concentrate, work, play and sleep. There are many causes:

• Wound infection
• Medication side effect
• Sensitivity from exposed wound/nerve tissue
• Iron-deficiency anemia
• Heat and sweating under bandages
• Presence of irritant or allergic sensitizers in ointments

When possible, treat and eliminate the underlying cause of itching. Often, however, that is not possible, and one must be creative in addressing the problem.

Basic recommendations for managing itching include:

• Avoid harsh soaps and perfumed products.
• Eliminate wool and rough clothing.
• Launder clothing and linens in mild detergents and avoid use of fabric softeners.
• Run laundry through an extra rinse cycle.
• Bathe with mild soaps such as Dove or mild cleansers such as Cetaphil.
• Take lukewarm (not hot) baths and rinse thoroughly
• Add oatmeal (Aveeno® oatmeal bath) or cornstarch to the bath
• Add ½ cup table salt to bath water (standard bathtub, half-filled)
• Avoid prolonged exposure to heat and humidity
• Take up a hobby or activity that distracts from the itching
• Replace one sensation with another: Gently tap the area, or apply cool compresses
• Have wounds evaluated by a physician, and treat infection (bacterial, fungal, yeast) if present.
• Apply a soothing emollient or other product after the bath: Eucerin ®Calming cream, Emu Oil, Aveeno® fragrance-free moisturizing lotion, Aquaphor ®ointment
• Keep cool by maintaining a cool environment (air conditioned); refrigerating creams and ointments; applying refrigerated refrigerated hydrogel sheet (Vigilon®, Nu-gel®, Cool Magic®, etc.)

Medications are an option, as well. Consult your physician to discuss use of any medication:

Antihistamines

• Antihistamines such as diphenhydramine (Benadryl®), hydroxyzine (Atarax®) and cyproheptadine (Periactin®) may be effective. These drugs are categorized as first-generation antihistamines and may cause sedation, drowsiness and impaired thinking (more prevalent in adults than children). Alcohol and tranquilizers will increase sedation and should be avoided. Many people find it most helpful to take a sedating antihistamine before bedtime to help them sleep.
• Antihistamines such as Loratidine (Claritin®) or Cetirizine (Zyrtec®) are second-generation antihistamines. They are usually not as sedating as the first-generation antihistamnes and may be effective for itching. Cetirizine has been reported to be especially effective for daytime use when taken at higher dosages. You should always consult with your doctor regarding any medication dose.
• Some individuals have reported decreased itching when taking a non-sedating antihistamine (such as Cetirizine) in the morning, and then taking a sedating antihistamine (such as hydroxyzine) in the evening.

When used regularly over time, antihistamines often lose their effectiveness, and higher doses may need to be given or a different one may need to be tried.

Although no clinical studies have been done with the following medications for the treatment of pruritus (itchy skin) in EB patients, they have been reported to help in some situations:

• Doxepin is a tricyclic antidepressant but also is a potent antihistamine. Many people with EB have achieved relief or improvement in pruritus when the medication is taken at bedtime.  (Topical doxepin cream [Zonalon] is not recommended, as it has been reported to cause allergic contact dermatitis and may lead to overdose when applied to large areas or open skin.)

If none of the aforementioned options are effective in treating pruritus, the patient should ask his or her physician to discuss the use of alternative medications with an EB specialist. Gabapentin (neurontin), ondansetron(Zofran), thalidomide are sometimes effective in treating severe pruritus. In addition, several antidepressant medications, including amityptiline (Elavil), paroxetine (Paxil), and mirtazapine (Remeron) have been used to treat pruritus. Use of antidepressant medications in patients with EB may be very helpful in relieving not only the associated itching but may also be helpful in managing anxiety and depression. These medications should be prescribed only by physicians experienced in their use with regards to dosing, side effects, and appropriate monitoring