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Objective  In children with Prader–Willi syndrome (PWS), growth hormone (GH) treatment has positive effects on bone mineral density (BMD). Two 1-year studies did not show a difference between GH or placebo on BMD in young adults with PWS. However, there are no studies investigating BMD during longer-term GH treatment in young adults with PWS.    Design  Open-label, a prospective study in 43 young adults with PWS.    Methods  BMD of the total body (BMD TB SDS) and lumbar spine (BMAD LS SDS) measured by DXA.    Results  In the total group, estimated mean (95% CI) of BMD TB  remained similar during 3 years of GH, being −0.76 (−1.11 to −0.41) SDS at start and −0.90 (−1.27 to −0.54) SDS after 3 years ( P  = 0.11), as did BMAD LS , being −0.36 (−0.72 to 0.01) SDS and −0.46 (−0.77 to −0.16) SDS, respectively ( P  = 0.16). In men, there was a significant decrease in BMD TB SDS during 3 years of GH, while BMAD LS SDS remained similar. In women, both BMD TB SDS and BMAD LS SDS remained similar. BMD TB SDS was associated with female sex, lean body mass and age. The majority of patients received sex steroid replacement therapy (SSRT).    Conclusions  During 3 years of combined GH and SSRT treatment, BMD remained stable in the normal range in young adults with PWS. However, men showed a decline in BMD TB SDS, probably due to insufficient SSRT. We recommended to continue GH treatment in young adults with PWS and to start SSRT during adolescence unless puberty progresses normally.

Bone mineral density during 3 years of growth hormone in previously GH-treated young adults with PWS