Background Behçet’s syndrome (BS) is an inflammatory disorder characterised by painful relapsing, remitting oral and genital ulceration. The General Practitioner of every new patient who is referred to our tertiary BS clinic is provided with a written information leaflet outlining a variety of available topical treatments for oral ulcerations. The information leaflet also advises on the use of oral steroids and colchicine for this purpose. Here we report on a survey undertaken by our department to assess patient reported efficacy of agents recommended for the treatment of ulceration.
Methods A postal questionnaire survey was sent to 200 patients attending our BS clinic. Consent was implied, by return of questionnaires. In the first part of the survey, subjects were asked to rate the effectiveness of a list of commonly recommended treatments (1= not at all useful, 10= incredibly useful, n=never tried). Secondly, patients were asked to provide comments and suggestions relating to treatments they had found to be effective for oral ulcerations and for genital ulcerations.
Results 70 responses were received. 46% were male. The median age was 47 years. 78% were White British. 19% were taking no medication, 49% steroids, 61% immunosuppressants and 17% TNF-blockers. Of the 70 responders, the most commonly tried treatments were non-steroidal mouth washes (71%); oral steroids (69%); steroid inhalers (44%); colchicine (44%); triamcinolone acetonide in an adhesive base (adacortyl in orabase) (40%); steroid mouth washes (30%); and hydrocortisone lozenges (19%). Less than 5% of respondents had tried sucralfate or gelclair. The median efficacy score (1= not at all useful, 10= incredibly useful) for oral steroids was 8.5 (n=48); beclomethasone inhaler 7 (n=31); colchicine 6 (n=31); steroid mouth washes 5 (n=21); sulcralfate 4 (n= 3); non steroid mouth washes 3 (n=50); hydrocortisone 2 (n=13) and gelclair 1 (n=1). In the second part of the study, patients provided comments about other treatments that they had found to be effective for ulcerations. Many patients mentioned that once an oral DMARD was started, both oral and genital ulcers improved greatly, or even resolved. Several also mentioned benefits obtained from salt water mouth rinses and aspirin mouth rinses. Regarding genital ulcers the most common comment was that no topical agent had been effective, although several patients did provide positive comments relating to beclomethasone inhalers, Instillagel ™ local anaesthetic gel and barrier creams.
Conclusions Oral and genital ulcerations are the hallmark features of BS. Oral and inhaler-applied steroids are commonly used and liked by our cohort of patients. Colchicine is also commonly tried and is perceived as moderately effective. Mouth washes and other topical treatments appear to have been less commonly tried, and additionally, where they have been used, have not been associated with as good an outcome. Many patients do not find topical treatments effective for genital ulcerations.
Disclosure of Interest None Declared