Use of Off-Label Drugs and Nutrition Supplements among Patients with Amyotrophic Lateral Sclerosis in Norway

Background and Objectives. Amyotrophic lateral sclerosis (ALS) is a lethal neurodegenerative disease, characterized by gradual paralysis and muscle atrophy. Riluzole, the only approved treatment in Norway, increases mean survival by 3–6 months. The use of off-label medications and nutritional supplements is common in other serious conditions, such as Parkinson’s disease and dementia. The aims of this study were to investigate to what extent Norwegian ALS patients use supplements and off-label medications and whether this is related to their health-related quality-of-life (HRQOL). Materials and Methods. A cross-sectional questionnaire study was performed, where 41 ALS patients reported their use of off-label treatments, as well as self-perceived HRQOL using the RAND-12 questionnaire. Results. A majority of respondents used riluzole. Of the 41 respondents, 18 (43.9%) reported use of off-label medications and 18 (43.9%) used nutritional supplements. Low-dose naltrexone was the most commonly used off-label medication, whereas vitamins accounted for most of the nutritional supplements. The respondents’ RAND-12 component scores were significantly lower than those of the general population. Low-dose naltrexone and vitamin B were associated with a better physical component score. Conclusions. Most of the respondents in our study adhere to the recommended treatment protocols, as less than half of them reported using off-label medications or nutritional supplements against ALS. Positive correlations between physical HRQOL and use of low-dose naltrexone or vitamin B were demonstrated. These results warrant further investigations