Long-term follow-up of patients with phenylketonuria receiving tetrahydrobiopterin treatment

J Inherit Metab Dis. 2010 Dec:33 Suppl 3:S163-9. doi: 10.1007/s10545-010-9058-x. Epub 2010 Mar 9.

Abstract

Treatment with tetrahydrobiopterin (BH4), the natural cofactor of phenylalanine hydroxylase (PAH), can reduce blood phenylalanine (Phe) levels in patients with BH4-responsive phenylketonuria (PKU). A number of studies has reported on the short-term BH4 treatment of patients with PKU, but long-term data are lacking. Here, we describe the effects of long-term treatment with BH4 on 16 patients, who showed a >28% reduction in blood Phe following testing for BH4 overload. The mean dose of BH4 was 16 mg/kg body weight (range 5-36 mg/kg body weight). The mean treatment duration was 56 months (range 24-110 months). Of 16 patients, 14 achieved long-term Phe control with BH4 treatment, with a mean blood Phe concentration of 321 ± 236 µmol/l. The mean decrease from baseline in blood Phe levels in these 14 patients was 54.6%. Of the seven patients who required continued dietary restriction, Phe intake increased from 200-300 mg/day to 800-1000 mg/day. Factors that may cause fluctuation of Phe levels in BH4-treated patients include patients' PAH genotype, Phe intake, changes in protein catabolism or anabolism, and periods of illness or infection.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Biomarkers / blood
  • Biopterins / administration & dosage
  • Biopterins / analogs & derivatives*
  • Biopterins / therapeutic use
  • Body Weight
  • Child
  • Child, Preschool
  • Combined Modality Therapy
  • Diet, Protein-Restricted
  • Drug Dosage Calculations
  • Follow-Up Studies
  • Humans
  • Infant
  • Infant, Newborn
  • Phenylalanine / blood
  • Phenylketonurias / blood
  • Phenylketonurias / diagnosis
  • Phenylketonurias / diet therapy
  • Phenylketonurias / drug therapy*
  • Time Factors
  • Treatment Outcome

Substances

  • Biomarkers
  • Biopterins
  • Phenylalanine
  • sapropterin