While there is no cure for motor neurone disease (MND) yet, there is a medication available in Australia, called Riluzole, for the treatment of amyotrophic lateral sclerosis (ALS) and progressive bulbar palsy (PBP) – the most common types of MND. Riluzole has been shown to slow progression of MND.
Some people with MND will also try vitamins, changes to their diet and other alternative therapies to complement the standard treatments.
Pain relief, anti-anxiety and other medications may also be used as part of managing the symptoms of MND. It is important to have honest and open discussions with your doctors to explore what medications can help relieve symptoms of MND.
All medications and therapies require careful management and should always be used with support from your healthcare team.
Scientists around the world continue to conduct research to learn about MND and to develop medications that may be able to slow, and one day cure, the disease.
Riluzole is a medicine sold under the names Rilutek™ and APO-Riluzole.
In Australia, Riluzole is made available by the government at a more affordable price for eligible people through the Pharmaceutical Benefits Scheme (PBS).
Eligible people must have a special kind of prescription – an “authority prescription”.
Riluzole comes in tablet and liquid form and can be bought from a pharmacy with a script from a neurologist or general practitioner (GP).
While Riluzole does not cure MND, recent research has suggested it probably prolongs average survival by 6 to 19 months.
For most people living with MND it is best to start taking Riluzole soon after diagnosis in order to receive the greatest benefit.
Motor neurones (nerves) carry electrical signals from the brain to the muscles which allows us to make voluntary movements like walking, swallowing and talking. In people with MND, the motor neurones gradually die, which means the electrical signals from the brain can’t get to the muscles to trigger them to move.
To begin with, the muscles gradually get weaker. Eventually, when there are no functioning neurones left to send signals to a muscle, that muscle stop working.
Riluzole is a medicine that blocks the release of glutamate. Glutamate is a neurotransmitter that is normally released by the nerves into the space between nerves (synapse) to act as a chemical messenger that stimulates the next nerve to send an electrical signal forward.
Riluzole is used as it is thought in motor neurone disease that:
To get your first authority prescription for Riluzole you must be diagnosed with MND by a neurologist, and have had the disease for five years or less and meet several other criteria.
Riluzole can affect liver function and should be prescribed with care in people who have pre-existing problems with their liver. Most common adverse effects from Riluzole are relatively minor and include fatigue and nausea.
Prescriptions may be issued by your GP after the initial authority prescription has been approved. An authority prescription requires a medical practitioner, such as your neurologist, to apply for permission from the government.
If you have been refused access to Riluzole under the PBS and think you are eligible, discuss this with your neurologist in the first instance, but for some a second opinion from another neurologist may be useful.
The drug Edaravone was developed by Mitsubishi Tanabe (MT) Pharma Corporation in Japan. It was originally used to treat stroke patients in Japan. In 2015 it was tested for use in people with Amyotrophic Lateral Sclerosis (MND). These tests suggested that it can slow the progression in a small sub-set of people with MND, potentially helping people to preserve function longer. It is most beneficial as an early treatment.
At this time, it is only approved for use in Japan, South Korea and the United States and has not been approved by the Therapeutic Goods Authority for use in Australia.
Some important points about Edaravone:
MND associations are often contacted by people living with MND and their families about treatments being offered both here and overseas that claim to treat or cure MND. Often, these treatments are promoted on websites that feature in internet search results when people are searching for information about MND.
It can be difficult to sort fact from fiction, and to distinguish good quality health information from paid advertising. A good place to learn about alternative treatments is to visit the ALS Untangled website, which helps people find better quality health information online.
ALS Untangled is managed by a research group that scientifically reviews alternative treatments and provides access to the outcomes on their website. This information supports people living with MND to make informed decisions about these therapies.
Remember that it is always important to check with your doctor or pharmacist before taking any new medication, even simple over-the-counter remedies. Checking helps make sure any remedy or other medication is safe to take with your current medication.
To learn more about off label unproven treatments and right to try read the International Alliance of ALS/MND Assciations Scientific Advisory Council (SAC) briefing notes.
MND Australia’s position statement on ‘Alternative therapies and people diagnosed with MND’ is available to read and contains other resources that are currently available to assist people to make informed decisions about alternative, off label and unproven treatments.
Other medicines and drug treatments are currently being developed and studied through clinical trials around the world, including Australia. The research could help find new drugs that make a positive difference to living with MND.
Generally, clinical trials are a high-quality form of research. The trials follow strict scientific processes and investigate if the proposed medication is effective and safe to use.
Figuring out whether a medication is safe and actually helps treat MND is very important because it can:
It can take significant amounts of time and resources for research to find effective drug treatments for MND. New developments in research, like platform trials, are seeking to address this challenge.
New research offers hope in speeding up the process through a more flexible approach, and by being able to do things like testing multiple drug treatments at once.
To learn more about some of the potential therapies currently being tested read the International Alliance of ALS/MND Associations Scientific Advisory Council (SAC) briefing notes.