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Should I take riluzole?

An article outlining the evidence for, and the limitations of riluzole therapy

Over 100 drugs have been tried in the treatment of MND/ALS, and to date only one - RILUZOLE - has been shown to have a significant effect on slowing the disease course. No one would argue that the effect is large, but it is important to explain what is, and what is not fair comment about Riluzole as a treatment for MND. It is important to note also that this document is a personal view, and that the drug has been scientifically reviewed and approved by the National Institute for Health & Clinical Excellence (or NICE - click here for full document).

What the clinical trials tell us

In the larger second randomised trial (where half the patients receive a placebo or 'dummy pill'), after 18 months there was an approximate 3 month longer survival in those MND patients taking Riluzole, which equates loosely to about a 10% improvement in life expectancy. This is not the same as saying "Riluzole only gives you an extra three months". Major adverse events were extremely rare, and subsequent long-term studies have confirmed that the drug is generally very safe if monitored correctly.

Riluzole: The Facts as we see them
1. Riluzole is not a cure for MND, but in a clinical trial it did show some effect in prolonging life expectancy.

2. Riluzole will not make you feel better - at best you will feel no different day-to-day.

3. You will never be able to know the exact benefit/difference it made to you.

4. About 10% of patients on Riluzole will experience significant gastrointestinal symptoms such as nausea or lethargy. This may improve over time, or respond to a dose reduction, but if significant then we would recommend stopping the drug. This is because we believe that for those affected individuals the small benefit does not justify feeling unwell whilst living with the many other challenges of MND.

5. Riluzole rarely causes significantly altered blood tests but these must be monitored at the start, monthly for three months, three-monthly for the rest of the year, then annually thereafter. Life-threatening blood test changes are extremely rare and amount to a handful of case reports. Small alterations in blood tests can respond to a dose reduction.

It's about choice

We (like NICE) believe all MND patients should be offered Riluzole, and have the chance to take it if they wish. We fully support those who decide to take it, but also the people who decide it is not for them.

Medical or Health care professionals at the centre will inform you of the manner in which this drug is provided as this varies depending on which area you live in. Any further questions that you have about Riluzole please contact Theresa Walsh.

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