Hereditary hemorrhagic telangiectasia patients can tolerate anticoagulation

Hereditary hemorrhagic telangiectasia (HHT) is an autosomal dominant disorder characterized by arteriovenous malformations (AVMs) and hemorrhage. HHT patients can also suffer from unrelated medical conditions requiring anticoagulant or antiplatelet treatment (collectively “AT”), though clinicians generally consider HHT a contraindication to AT. We hypothesized that HHT patients can tolerate AT with minimal hemorrhage. Through a chart review of 469 definite HHT patients (1997–2009), we found that 64 (14 %) had received AT. Forty-three out of 64 (67 %) underwent a telephone survey to retrospectively inquire about prescription, early cessation, and HHT-related bleeding. At the time of the study, nine patients were deceased, nine declined, and three were unreachable. During AT treatment, ten (23 %) reported severe complications (blood transfusion, emergency room visit, or hospital admission), while 25 (58 %) reported minor complications (increase or development of epistaxis, gastrointestinal bleeding, and anemia). No patients reported pulmonary/cerebral hemorrhage. The 43 patients received a total of 69 courses of AT. Fourteen out of 69 (20 %) AT courses in 13 patients required early cessation, mostly due to epistaxis. Two out of nine (22 %) deceased patients required early cessation. We conclude that HHT patients can be treated with AT but should be monitored closely given their risk for worsening chronic bleeding and should be screened/treated for pulmonary or cerebral AVMs prior to AT treatment.