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
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
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
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
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.