A medicine for motor neurone disease
Riluzole
A medicine used in motor neurone disease (ALS) that can modestly extend survival but does not cure the condition.
What is Riluzole?
Riluzole is used for motor neurone disease (amyotrophic lateral sclerosis, ALS). It can modestly extend survival or the time before needing breathing support, but it does not cure the disease or reverse symptoms. It is taken as a regular tablet or liquid, with blood tests to check the liver and watch for infection.
Education and reference only. This is a plain-language guide to Riluzole — it deliberately contains no doses. Doses depend on the person, the brand and the reason for treatment, and belong with your prescriber. Always check the BNF, the product labelling (SmPC) and follow medical advice.
What it is
Riluzole is the main medicine licensed in the UK for motor neurone disease, specifically amyotrophic lateral sclerosis (ALS). It is not a cure and does not reverse weakness, but in studies it modestly extends survival or the time before a person needs breathing support. It is usually started by a specialist neurology team and taken long-term as a tablet or, for those who find swallowing difficult, a liquid.
How it works
In motor neurone disease, the nerve cells that control muscles are progressively damaged, and a brain chemical called glutamate is thought to contribute to this damage. Riluzole reduces the activity of glutamate, which is believed to slow the rate at which these nerve cells are lost. This is how it can modestly extend survival, even though it does not repair nerves already affected.
Company & origin
Originated / developed by: Sanofi (originator).
Introduced in the 1990s as the first medicine licensed to modestly extend survival in motor neurone disease.
Practical use
How to take Riluzole
General, dose-free guidance — always follow your prescriber's and the leaflet's specific instructions.
- It is usually taken twice a day, at evenly spaced times such as morning and evening.
- Tablets are best taken on an empty stomach, about an hour before or two hours after food, for consistency.
- The liquid form can be used for people who have difficulty swallowing tablets.
- Take it regularly and do not stop without speaking to your specialist team.
- If you miss a dose, skip it and take the next one as usual; do not take two doses together.
Weighing it up
Advantages & disadvantages of Riluzole
Advantages
- The first and main medicine shown to modestly extend survival in motor neurone disease.
- Available as a liquid for people who find swallowing difficult.
- Generally taken as a straightforward twice-daily medicine alongside wider supportive care.
Disadvantages
- Modestly slows the disease but does not cure it or reverse weakness.
- Requires regular blood tests to check the liver and watch for infection.
- Can cause tiredness, nausea, dizziness and, rarely, liver or blood-count problems.
Practical use
Good to know
Riluzole is usually taken twice a day, and it works best taken consistently. It can affect the liver, so blood tests (liver function tests) are done before starting and regularly during treatment, more often at first. It can also rarely lower the white blood cells that fight infection, so a high temperature, sore throat or other signs of infection should be reported promptly so a blood test can be checked. It is important to understand that riluzole modestly slows the disease rather than curing it, and it is one part of wider care that includes physiotherapy, breathing and swallowing support.
Who should not take it / use with caution
- People with existing significant liver disease or abnormal liver blood tests may be unsuitable or need close monitoring.
- People who have had an allergic reaction to riluzole should not take it.
- It is not recommended in pregnancy or breastfeeding unless a specialist advises the benefits outweigh the risks.
Monitoring
- Liver function blood tests are done before starting and regularly during treatment, more often at first.
- Blood counts are checked if there are signs of infection such as fever or sore throat.
- Overall condition, breathing and swallowing are monitored by the specialist team as part of wider care.
Side effects
- Common: tiredness, nausea, dizziness, headache and stomach upset.
- It can affect the liver; report yellowing of the skin or eyes, dark urine or persistent sickness.
- Report any fever, sore throat or signs of infection promptly, as it can rarely lower infection-fighting blood cells.
Key interactions
- Other medicines that can affect the liver, and heavy alcohol use, may add to the risk of liver problems.
- Smoking and some medicines can change riluzole levels, so tell your team about all medicines you take.
- Caffeine and certain medicines processed by the same liver pathway can interact; check before adding new ones.
Available as: Tablets and an oral liquid (suspension).
Answers
Riluzole: frequently asked questions
Does riluzole cure motor neurone disease?
No. It can modestly extend survival or the time before needing breathing support, but it does not cure the disease or reverse weakness.
Why do I need regular blood tests?
Riluzole can affect the liver and, rarely, lower infection-fighting blood cells. Blood tests check the liver regularly and are done if you show signs of infection.
What should I do if I get a fever?
Report any fever, sore throat or other signs of infection promptly so a blood test can be checked, as riluzole can rarely lower white blood cells.
Should I take it with food?
It is best taken on an empty stomach for consistent absorption, about an hour before or two hours after eating, unless your team advises otherwise.
Is there an option if swallowing is difficult?
Yes. Riluzole is also available as a liquid (suspension), which can help people who struggle to swallow tablets.
Authoritative sources
- BNF
- NICE CKS
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