Scalais Emmanuel, Osterheld Elise, Geron Christine, Pierron Charlotte, Chafai Ronit, Schlesser Vincent, Borde Patricia, Regal Luc, Laeremans Hilde, van Gassen Koen L I, van den Heuvel L Bert, De Meirleir Linda
Pediatric Neurology Centre Hospitalier de Luxembourg Luxembourg.
Department of Pediatrics Centre Hospitalier de Luxembourg Luxembourg.
JIMD Rep. 2019 Jul 1;49(1):70-79. doi: 10.1002/jmd2.12055. eCollection 2019 Sep.
Intracellular cobalamin metabolism (ICM) defects can be present as autosomal recessive or X-linked disorders. Parenteral hydroxocobalamin (P-OHCbl) is the mainstay of therapy, but the optimal dose has not been determined. Despite early treatment, long-term complications may develop. We have analyzed the biochemical and clinical responses in five patients with early onset of different types of ICM defects (cblC: patients 1-3; cblA: patient 4; cblX: patient 5) following daily P-OHCbl dose intensification (DI). In patient 4, P-OHCbl was started at age 10 years and in patient 5 at age 5 years. OHCbl was formulated at either, 5, 25, or 50 mg/mL. P-OHCbl was intravenously or subcutaneously (SQ) delivered, subsequently by placement of a SQ injection port except in patient 4. In all patients, homocysteine and methylmalonic acid levels, demonstrated an excellent response to various P-OHCbl doses. After age 36 months, patients 1-3 had a close to normal neurological examination with lower range developmental quotient. In patient 3, moderate visual impairment was present. Patient 4, at age 10 years, had normal renal, visual and cognitive function. In cblX patient 5, epilepsy was better controlled. In conclusion, P-OHCbl-DI caused an excellent control of metabolites in all patients. In the three cblC patients, comparison with patients, usually harboring identical genotype and similar metabolic profile, was suggestive of a positive effect, in favor of clinical efficacy. With P-OHCbl-DI, CblA patient has been placed into a lower risk to develop renal and optic impairment. In cblX patient, lower P-OHCbl doses were administrated to improve tolerability.
细胞内钴胺素代谢(ICM)缺陷可表现为常染色体隐性或X连锁疾病。肠外羟钴胺素(P-OHCbl)是主要治疗方法,但最佳剂量尚未确定。尽管进行了早期治疗,仍可能出现长期并发症。我们分析了5例不同类型ICM缺陷(cblC:患者1-3;cblA:患者4;cblX:患者5)早期发病患者在每日P-OHCbl剂量强化(DI)后的生化和临床反应。患者4在10岁开始使用P-OHCbl,患者5在5岁开始使用。OHCbl的配制浓度为5、25或50mg/mL。P-OHCbl通过静脉或皮下(SQ)给药,除患者4外,随后通过放置皮下注射端口给药。在所有患者中,同型半胱氨酸和甲基丙二酸水平对不同剂量的P-OHCbl均有良好反应。36个月后,患者1-3的神经学检查接近正常,但发育商较低。患者3存在中度视力损害。患者4在10岁时,肾脏、视力和认知功能正常。在cblX患者5中,癫痫得到更好控制。总之,P-OHCbl-DI使所有患者的代谢产物得到良好控制。在3例cblC患者中,与通常具有相同基因型和相似代谢谱的患者相比,提示有积极效果,有利于临床疗效。使用P-OHCbl-DI,CblA患者发生肾脏和视神经损害的风险降低。在cblX患者中,给予较低剂量的P-OHCbl以提高耐受性。