UK study shows relationship between rapamycin levels, lung function response and side effects in a group of women with LAM

The study was conducted at the National Centre for Lymphangioleiomyomatosis at Nottingham University Hospitals NHS Trust between 2011 and 2017.

47 women receiving care at the LAM Centre, who had been treated with rapamycin for over 1 year, were included in the study.

The women were assessed through a range of tests at regular intervals and side effects recorded. The women’s lung function response to rapamycin was measured and changes in FEV (Forced Expiratory Value) over time calculated.

Overall, rapamycin was associated with reduced disease progression, but a significant minority continued to lose lung function at an accelerated rate.

In all cases, treatment with rapamycin was associated with improvements in FEV. Those with most favourable values of FEV, tended to have had LAM for less time and had better lung function, particularly FEV at the start of the treatment. This may suggest that early intervention with low dose rapamycin may be the best way to preserve lung function.

Access abstract and article: ‘Lung function response and side effects to rapamycin for lymphangioleiomyomatosis: a prospective national cohort study’; Janet Bee, Sharon Fuller, Suzanne Miller, Simon R Johnson; Thorax 2018; 73: 369-375