Rilutek is the first ALS treatment to obtain U.S. Food and Drug Administration approval. Scientists are still not sure how it works, but clinical trials showed it significantly improved patients’ survival. Studies have suggested it works better in some patients than others, however.
Researchers decided to look at the survival patterns of 681 ALS patients in Italy’s Emilia Romagna Region who took Rilutek.
Their study, published in the Journal of Neurology, was titled “Riluzole and other prognostic factors in ALS: a population-based registry study in Italy.”
The team obtained patient information from the Emilia Romagna Registry for ALS. They focused on cases diagnosed between 2009, when the registry was started, and 2014.
Five hundred seventy-three of the 681 patients — or 84 percent — had taken Rilutek.
The drug failed to significantly improve the patients’ survival as a whole, researchers discovered. But two groups within the population did survive longer — those who began taking Rilutek early in their disease and those who took it for a long time.
Patients who took it at least three-fourths of the time they had their disease “had a median survival of 29 months, compared to 18 months in patients” who took it less, the researchers wrote.
Several factors besides how long patients took Rilutek could affect patients’ survival, the team said. These included the age when patients’ symptoms appeared, how much time went by before they were properly diagnosed, whether they had lost weight when they were diagnosed, whether or not they had dementia, whether they needed a ventilation device, and whether they needed to be feed through a tube.
When researchers accounted for these other elements, they concluded that “independently from [these] other prognostic factors, patients who received riluzole [Rilutek] for a longer period of time survived longer.”
They said “further population-based studies are needed to verify if long-term use of riluzole [Rilutek] prolongs survival.”