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黏多糖贮积症 VI 的酶替代治疗——台湾的经验。

Enzyme replacement therapy for mucopolysaccharidosis VI--experience in Taiwan.

机构信息

Department of Pediatrics, Mackay Memorial Hospital, No 92, Sec 2 Chung-Shan North Road, Taipei 10449, Taiwan.

出版信息

J Inherit Metab Dis. 2010 Dec;33 Suppl 3:S421-7. doi: 10.1007/s10545-010-9212-5. Epub 2010 Oct 6.

DOI:10.1007/s10545-010-9212-5
PMID:20924685
Abstract

Information regarding the clinical outcome of enzyme replacement therapy (ERT) with recombinant human N-acetylgalactosamine 4-sulfatase (rhASB) for mucopolysaccharidosis (MPS) VI in Asian patients is limited. We reviewed nine Taiwanese patients with MPS VI (four males and five females; age range 1.4-21.1 years) treated with weekly intravenous infusions of rhASB (1.0 mg/kg) for at least 2 years. We assessed the biochemical and clinical response every 3 months. After 2 years of treatment, seven patients experienced improvement over baseline in the 6-min walk by a mean of 69.3 m (27.3%), and seven also increased the 3-min stair climb by a mean of 47 steps (35.7%). Shoulder range of motion in all patients improved, and Joint Pain and Stiffness Questionnaire scores improved by 0.597 points (30.5%). Four patients had improved pulmonary function [forced expiratory volume in 1 s increased by 0.130 L (26.3%) and forced vital capacity by 0.148 L (27.6%)]. The respiratory disturbance index decreased in the four patients who underwent polysomnography. A mean overall 51% decrease in urinary glycosaminoglycan excretion indicated a satisfactory biochemical response. ERT was well tolerated by all patients. This treatment is thus beneficial and appears to be safe for treatment of MPS VI in Taiwanese patients.

摘要

关于用重组人 N-乙酰半乳糖胺 4-硫酸酯酶(rhASB)进行酶替代疗法(ERT)治疗黏多糖贮积症(MPS)VI 的亚洲患者的临床结果的信息有限。我们回顾了 9 名接受 rhASB(1.0mg/kg)每周静脉输注治疗至少 2 年的 MPS VI 台湾患者(4 名男性,5 名女性;年龄范围 1.4-21.1 岁)。我们每 3 个月评估一次生化和临床反应。治疗 2 年后,7 名患者在 6 分钟步行试验中比基线平均提高了 69.3m(27.3%),7 名患者在 3 分钟爬楼梯试验中也平均增加了 47 步(35.7%)。所有患者的肩部活动范围均有所改善,关节疼痛和僵硬问卷评分提高了 0.597 分(30.5%)。4 名患者的肺功能改善[1 秒用力呼气量增加 0.130L(26.3%),用力肺活量增加 0.148L(27.6%)]。接受多导睡眠图检查的 4 名患者的呼吸干扰指数下降。尿糖胺聚糖排泄量平均下降 51%,表明生化反应令人满意。所有患者均能耐受 ERT。因此,这种治疗方法对台湾患者的 MPS VI 治疗有益且安全。

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