Treatment and medication
Update August 2020
A recent review suggests that riluzole treatment may extend survival by 6-19 months, which is far longer than that reported in the original clinical trials and points to benefits for both early intervention and prolonged treatment with riluzole. Please read the review here.
Please read the following statement from Sanofi regarding the supply of Rilutek in New Zealand:
Rilutek tablets continue to be available, stock is being managed by Sanofi to ensure there are no supply disruptions in New Zealand while we register changes to the manufacturing process. If you are having difficulty obtaining Rilutek please contact medical information on 0800 283 684 option 2 or via email
Update April 2019
Recently it has come to our attention that some of our clients have been prescribed the drug Riluzole (trade name “Rilutek”) by their general practitioner.
Under the Medicines Act 1981, Rilutek can only be prescribed by specialist physicians who care for patients with Motor Neurone Disease, neurologists and palliative care physicians. This includes repeat prescriptions.
Find out more about prescribing of Riluzole here.
Update July 2019
See the update on the 'Proposed changes to the prescribing of Riluzole - Ministry of Health Consultation open until 9th August 2019' here.
Update October 2019
Medsafe released the outcome of the consultation on the proposed changes. 28 submissions were received, all supportive of the change.
From 7th October 2019, the prescribing restriction on riluzole is:
”Riluzole can only be prescribed by authorised prescribers where the prescribing decision is taken in collaboration with, or following consultation with, physicians who care for patients with Motor Neurone Disease, neurologists and palliative care physicians.”
Click here to read the full statement from Medsafe on the consultation and outcome.[EK20]
MND New Zealand are pleased with this outcome and agree that it is important for all people living with MND to have adequate access to riluzole, in all areas of New Zealand.
More on Riluzole
A diagnosis of less than five years duration, with good respiratory function is necessary for approval. In addition the person must be ‘ambulatory’, or ‘able to use the upper limbs’, or ‘able to swallow’. These conditions are not defined in detail.
Most newly diagnosed individuals in New Zealand are eligible.
Riluzole, 100mg per day, results in a benefit of about 9% gain in the probability of surviving one year after treatment allocation, and increased median survival from 11.8 to 14.8 months.
It is important to know that the loss of functions caused by MND will continue despite the treatment.
As with all drugs, some people may have a better response to Riluzole than others. It is impossible to predict the benefits that each individual will gain.
Not all patients tolerate the treatment but, overall, tolerance is satisfactory. The most common side effects of Riluzole are weakness, nausea, mild liver dysfunction and headache. Doctors can provide guidance on managing any obvious side effects and 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.
Discuss with your neurologist if this treatment is right for you.