The Riluzole program

The Riluzole program: determining the appropriate Riluzole

With the film-coated tablet, the melting film and a suspension, 3 Riluzole dosage forms are available, the use of which should be decided individually and reviewed throughout the course of the disease. The decision on the appropriate Riluzole is quite complex and is largely determined by the swallowing function and the presence of a PEG.

Another decision factor is any excess salivation (sialorrhea). The Riluzole program was established in the ALS pharmacy program to support the decision on the appropriate dosage form of Riluzole (and other medications).

Further information

What is the Riluzole program?

The decision on the appropriate Riluzole is made by a specialist in neurology. The patient is of course involved in this process. In ALS outpatient clinics, the ALS Functional Rating Scale (ALSFRS-R) is an important guide in the decision-making process. Swallowing (including the possible use of a PEG) and salivation are based on the ALS Functional Scale (questions 3 & 2 of the ALSFRS-R). The ALSFRS-R has a special status, as this scale is used by both the doctor and the patient (ALSFRS-R-SE) can be collected.

By self-assessing the ALSFRS-R-SE via the ALS app patients can communicate their ALS-related symptoms (including swallowing and salivation) in a structured way. The results of the ALSFRS-R-SE self-assessment can be viewed by trained coordinators in the outpatient partner care network and by ALS pharmacies. If a swallowing disorder (or a PEG) is present, both pharmacies and coordinators can make a recommendation to switch the Riluzole medication to the melt film or suspension. The final decision lies with the doctor. The collaboration between ALS pharmacists, ALS coordinators, the patient and the doctor is known as the Riluzole program. This program is an offer in the outpatient partner care network and a component of the ALS pharmacy program.

The Riluzole program has the following contents

– Recording of difficulties in taking medication by ALS pharmacy
– Recommendation of DMQ treatment by ALS pharmacy to doctor (for 3 to 2 scale points in question 1 of the ALSFRS-R-SE)
– Sending doctor’s information and instructions on doctor’s prescription from ALS pharmacy to patient (for forwarding to doctor’s practice)
– Monthly self-assessment on speaking about ALS app (only if participating in ALS app)
– Consultation of ALS pharmacy with patients or relatives regarding swallowing disorder or placement of a PEG and recommendation of medication change by ALS pharmacy to doctor (if necessary)

Management of the program

Do you have questions about the Riluzole program? I will be happy to help you!

Dr. Dr. Susanne Spittel

Head of Research and Pharmacy Programs

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