Scottish Motor Neurone Disease Association

Scottish Motor Neurone Disease Association	Additional Information
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The Scottish Motor Neurone Disease Association would like to thank Dr Stuart Neilson and Dr Frank Clifford Rose for permission to use the following extracts from their book. “Motor Neurone Disease” At Your Fingertips Guide”. Class Publishing (London) Ltd 2003 ISBN: 859590470 How long does diagnosis take? Who is at greatest risk of developing MND? What are the symptoms and how fast does MND progress? Are other members of my family likely to get MND too? Are there any drugs for treating MND? What are Stem Cells? Is it safe for me to continue regular exercise? Are there any drugs for treating MND? There is only one drug licensed specifically for preventing the progression of MND, riluzole (which has the trade name Rilutek). It is the only drug so far that has completed clinical trials. Glutamate metabolism is affected in MND and it is thought that excessive concentrations of glutamate around motor neurones are toxic and result in their deterioration. Riluzole is a drug that binds together with glutamic acid, blocks its effects and reduces the concentration of glutamate around motor neurones. Clinical trials of riluzole showed that survival was improved in people with MND, slightly but statistically significant. In other words, riluzole does not ‘cure’ MND in the sense of reversing existing symptoms and restoring former health. It may slow deterioration by slowing further progression of symptoms. The effect of riluzole appears to be greates for people with chronic progressive MND and more limited (or not significant) in other types of MND – so riluzole is not a suitable treatment for everyone with MND. Further trials are continuing, assessing the types of MND where it might be most effective, the dosage to be given and whether the results can be improved when it is taken in combination with other drugs. In summary, riluzole is the only MND-specific treatment available, having the effect of slowing progression of symptoms in some, but not all, with MND; it is not a cure. Riluzole is taken as a 50mg capsule, twice daily. It should be prescribed initially by a neurologist. It should not be given to those with liver disease; liver function tests will be made before and during treatment. If the liver enzymes increase five-fold, the drug will be stopped. Other side effects include weakness, headaches, sleepiness, abdominal upset and dizziness; these side effects are quite common with other drugs. In addition you might sense pins and needles around the mouth. It should be pointed out that all drugs carry the risk of side effects and of interaction with other medications, should you be taking more than one. Antidepressants, for example, can be addictive and have a cumulative effect. Your body takes some time to excrete all the drug and with time you may need more and more to get the same effect as the initial dose.
Scottish Motor Neurone Disease Association, 76 Firhill Road,, Glasgow, G20 7BA, Tel: 0141 945 1077, Fax: 0141 945 2578, email: The Scottish Motor Neurone Disease Association is a company limited by guarantee, registered in Scotland, number 217735. It is registered as a Scottish Charity with the Office of the Scottish Charity Regulator (OSCR), SCO 02662.

The Scottish Motor Neurone Disease Association would like to thank Dr Stuart Neilson and Dr Frank Clifford Rose for permission to use the following extracts from their book. “Motor Neurone Disease” At Your Fingertips Guide”. Class Publishing (London) Ltd 2003 ISBN: 859590470

Are there any drugs for treating MND?

There is only one drug licensed specifically for preventing the progression of MND, riluzole (which has the trade name Rilutek). It is the only drug so far that has completed clinical trials. Glutamate metabolism is affected in MND and it is thought that excessive concentrations of glutamate around motor neurones are toxic and result in their deterioration. Riluzole is a drug that binds together with glutamic acid, blocks its effects and reduces the concentration of glutamate around motor neurones.

Clinical trials of riluzole showed that survival was improved in people with MND, slightly but statistically significant. In other words, riluzole does not ‘cure’ MND in the sense of reversing existing symptoms and restoring former health. It may slow deterioration by slowing further progression of symptoms. The effect of riluzole appears to be greates for people with chronic progressive MND and more limited (or not significant) in other types of MND – so riluzole is not a suitable treatment for everyone with MND. Further trials are continuing, assessing the types of MND where it might be most effective, the dosage to be given and whether the results can be improved when it is taken in combination with other drugs. In summary, riluzole is the only MND-specific treatment available, having the effect of slowing progression of symptoms in some, but not all, with MND; it is not a cure.

Riluzole is taken as a 50mg capsule, twice daily. It should be prescribed initially by a neurologist. It should not be given to those with liver disease; liver function tests will be made before and during treatment. If the liver enzymes increase five-fold, the drug will be stopped. Other side effects include weakness, headaches, sleepiness, abdominal upset and dizziness; these side effects are quite common with other drugs. In addition you might sense pins and needles around the mouth.

It should be pointed out that all drugs carry the risk of side effects and of interaction with other medications, should you be taking more than one. Antidepressants, for example, can be addictive and have a cumulative effect. Your body takes some time to excrete all the drug and with time you may need more and more to get the same effect as the initial dose.