Substrate reduction therapy with miglustat in chronic GM2 gangliosidosis type Sandhoff: results of a 3-year follow-up

J Inherit Metab Dis. 2010 Dec:33 Suppl 3:S355-61. doi: 10.1007/s10545-010-9186-3. Epub 2010 Sep 4.

Abstract

GM2 gangliosidosis type Sandhoff is caused by a defect of beta-hexosaminidase, an enzyme involved in the catabolism of gangliosides. It has been proposed that substrate reduction therapy using N-butyl-deoxynojirimycin (miglustat) may delay neurological progression, at least in late-onset forms of GM2 gangliosidosis. We report the results of a 3-year treatment with miglustat (100 mg t.i.d) in a patient with chronic Sandhoff disease manifesting with an atypical, spinal muscular atrophy phenotype. The follow-up included serial neurological examinations, blood tests, abdominal ultrasound, and neurophysiologic, cognitive, brain, and muscle MRI studies. We document some minor effects on neurological progression in chronic Sandhoff disease by miglustat treatment, confirming the necessity of phase II therapeutic trials including early-stage patients in order to assess its putative efficacy in chronic Sandhoff disease.

Publication types

  • Case Reports

MeSH terms

  • 1-Deoxynojirimycin / analogs & derivatives*
  • 1-Deoxynojirimycin / therapeutic use
  • Disease Progression
  • Enzyme Inhibitors / therapeutic use*
  • Glucosyltransferases / antagonists & inhibitors*
  • Glucosyltransferases / metabolism
  • Humans
  • Magnetic Resonance Imaging
  • Male
  • Middle Aged
  • Muscle Weakness / diagnosis
  • Muscle Weakness / drug therapy
  • Muscle Weakness / etiology
  • Muscular Atrophy, Spinal / diagnosis
  • Muscular Atrophy, Spinal / drug therapy
  • Muscular Atrophy, Spinal / etiology
  • Neurologic Examination
  • Predictive Value of Tests
  • Sandhoff Disease / complications
  • Sandhoff Disease / diagnosis
  • Sandhoff Disease / drug therapy*
  • Sandhoff Disease / enzymology
  • Sandhoff Disease / genetics
  • Time Factors
  • Treatment Outcome

Substances

  • Enzyme Inhibitors
  • 1-Deoxynojirimycin
  • miglustat
  • Glucosyltransferases
  • ceramide glucosyltransferase