Unmet need in Behcet’s disease: most patients in routine follow-up continue to have oral ulcers

Abstract

The clinical course of Behcet's disease (BD) as a multisystemic disorder with a remitting-relapsing nature is insufficiently explored. As complete remission should be aimed in all inflammatory diseases, we investigated the frequency of complete remission in patients with BD followed in long-term, routine practice. In this retrospective study, 258 patients with BD who were regularly followed in outpatient clinics were assessed. The demographic and clinical data for active organ manifestations and treatment protocols were evaluated, and "complete remission" for this study was defined as no sign of any disease manifestation in the current visit and the preceding month. Two hundred fifty-eight patients with BD (F/M 130/128, mean age 41.1 ± 11.5 years) were included to the study. Mucocutaneous disease was present in 48.4 % (n = 125). Mean visit number was 6.8 ± 2.7, and mean follow-up duration was 45.8 ± 36.5 months. Patients were clinically active in 67.2 % (n = 1,182) of the total visits (n = 1,757), which increased to 75.6 % (68.1-90.3) when the month preceding the visit was also included. The most common active manifestation was oral ulcers (39.4-63.2 %) followed by other mucocutaneous manifestations and musculoskeletal involvement. When multivariate analysis was performed, oral ulcers, which are the main cause of the clinical activity, negatively correlated with immunosuppressive treatments (β = -0.356, p < 0.000) and age (β = -0.183, p = 0.04). It is fairly difficult to achieve complete remission in BD with current therapeutic regimens. The reluctance of the clinician to be aggressive for some BD manifestations with low morbidity, such as mucocutaneous lesions and arthritis, might be influencing the continuous, low-disease activity state, especially due to oral ulcers, in BD patients.

The assessment of work productivity and activity impairment in Behçet’s disease

“…They might have more emotional distress due to the economic impact of disease symptoms because men are the main workforce in Turkish culture. Moreover, as severe organ involvement is a risk factor for mortality and morbidity in young male patients, aggressive treatment protocols with immunosuppressive medications are commonly used to eliminate these risks (22)(23)(24). Therefore, our results reflect the predictions and perceptions of patients on the clinical course of BD.…”

Development of de novo major involvement during follow-up in Behçet’s syndrome

“…Moreover, Alpsoy et al [17] in a multicenter study observed a significant increase in the mean clinical severity scores of BS patients between the first visit and the end of follow-up and this difference was significantly higher in those patients with a young disease onset. In this line, the message that male and younger BS patients have a more severe course does not represent a novelty and has been reported in several studies [18,19]; actually, we well know that, besides organ involvement, demographic factors could also considerably influence the long-term and short-term outcomes of BS [20]. However, the growing evidence of the similar findings may suggest that not only the presence or the absence of organ involvement should represent the determining element in the choose of start an immunosuppressant drug in BS, but also the age and sex, even if a major involvement is not present.…”

Oral ulcer activity in Behcet’s disease: Poor medication adherence is an underestimated risk factor

“…Therefore, the treatment of mucocutaneous disease is lesser aggressive that in case of major organ involvement. Lastly, patient expectations, which are usually "total cure, " cannot be met in case of mucocutaneous involvement (12). Poor understanding of the illness and psychological distress may also be related to nonadherence to treatment regimens in females (25,26).…”