There is no cure for motor neurone disease (MND) yet. A medication has been approved in Australia for the treatment of amyotrophic lateral sclerosis (ALS) - the most common form of MND.
Riluzole, (sold as Rilutek™, APO-Riluzole or its liquid form Teglutik), is available on the Pharmaceutical Benefits Scheme for people who meet defined eligibility criteria. Riluzole can be prescribed, initially, by a neurologist. Subsequent prescriptions can be provided by a general practitioner. It may:
- Extend survival time by an average of 6 to 19 months
- Slow disease progression
- Keep people in the milder stages of disease for longer, thus contributing to quality of life.
People started on Riluzole soon after diagnosis show the greatest benefits. As with all drugs, some people may have a better response to Riluzole than others, and it is impossible to predict the benefits that each individual will gain. Neurologists will be able to provide guidance on the suitability of this treatment.
Riluzole Side Effects
The most common side effects of Riluzole are weakness, nausea, a mild liver dysfunction and headache. Doctors may arrange for people to have regular blood tests to ensure that Riluzole is not causing side effects of which the person is not aware.
For more information please contact your neurologist, telephone the Riluzole hotline on 1800 005 858, or download the National MND Association's Riluzole fact sheet.
Riluzole fact sheet
Costly and unproven therapies are sometimes recommended by well meaning people. People need to seek professional advice before embarking on unproven therapies. It is important to discuss the likely benefits of expensive therapy compared with, for example, changes to the home, employment of additional home assistance, or the peace of mind of the person who wishes to leave his/her family well provided for.
For more information on unproven therapies, please read MND Australia's Unproven and unapproved treatments in Australia and their Policies and Position Statements. The ALS Untangled website helps patients with MND/ALS to review alternative and off-label treatments.
What’s to come?
Researchers are developing and trialling other drugs to slow down the progression of the disease or combat some of the symptoms. For further information, health professionals, people with MND, and their carers need to speak to the neurologist, contact MND Victoria, or MND Australia.
Occasionally, major advances are broadcast in the media. Further information can be obtained by searching the Internet. Motor Neurone Disease Associations in each state keep a close watch on research progress and findings, and always have the latest information available. They are donors to MND Research Australia, which funds a number of projects looking for new data that may lead to more effective treatments and ultimately a cure.
Until there's a cure, there's care.
Although there is currently no cure, it is not true to say that, "Nothing can be done for someone living with MND." A great deal can be done to maintain quality of life and address many of the effects of MND. Click below to see how you or someone you know, can look after themself throughout their MND journey.
Looking After Yourself