Patients' perception of stopping or continuing treatment of cervical dystonia with botulinum toxin type A

Despite widespread commercial acceptance of botulinum; toxin (BTX) for idio pathic cervical dystonia (ICD!, no follow up has been performed to determin e when and why some patients stop therapy. It has been suggested that some patients who stop BTX treatment may do so because of permanent improvement, (1) We surveyed 155 patients with ICD who were treated over 6 years with BT X to determine when and why patients stopped treatment with BTX. and what a dverse events and changes in dose and/or frequency of treatments occurred i n those who continued treatment. Of the 133 (86.6%) individuals returning t he surveys, 104 continued on BTX treatment and 29 had stopped therapy. Of t he 29 subjects no longer receiving BTX, 11 individuals had only received on e or two injections, Prior surgical treatment far ICD did not influence the ir decision to stop therapy. Of those 104 of 133 continuing on BTX treatmen ts, two thirds of the subjects reported the injections always help, whereas one quarter estimated one set of injections did not help. One third of tho se continuing treatment reported the first injection was most helpful, wher eas another one third felt all injections were similarly effective. After a n initial adjustment, BTX dosages and frequency of treatment remained stabl e in this group.