Pruritus is a common complication in patients with
epidermolysis bullosa (EB). There is limited published data about the treatments that individuals with EB use for
pruritus. The objective of the current study was to determine quantitatively which treatments individuals with EB have used for
pruritus and to evaluate the perceived effectiveness of these treatments in
pruritus relief. A questionnaire was developed to evaluate the treatments and
therapies used for
pruritus in patients of all ages and for all types of EB. Questions about bathing products, moisturizers, topical products, oral medications, dressings, and
alternative therapies were included. A 5-point Likert scale (-2 = relieves itch a lot, -1 = relieves itch a little, 0 = no change, 1 = increases itch a little, 2 = increases itch a lot) was used to evaluate perceived effectiveness. Patients from seven North American EB centers were invited to participate. Greasy
ointments (53.4%), lotions (45.2%), creams (40.4%), and oral
hydroxyzine (39.0%) were the most frequently used treatments for
pruritus. Treatments that were used frequently and perceived to be the most effective included creams (mean = -1.1), topical prescription
corticosteroids (mean = -1.0),
oils (mean = -0.9), oral
hydroxyzine (mean = -0.9), topical
diphenhydramine (mean = -0.9), and vaporizing rub (
menthol,
camphor, eucalyptus) (mean = -0.9). Systemic
opioids (mean = 0.3), adherent bandages (mean = 0.3), and bleach
baths (mean = 0.2) slightly increased
pruritus. Randomized controlled trials of
therapies will be necessary to develop evidence-based recommendations for control of
pruritus in individuals with EB.