Medication, trials and research for MND

The only medication licensed for the treatment of MND is riluzole. Other medication may be prescribed to help relieve various symptoms associated with MND, and physiotherapy may also help (see ‘Physical therapy and exercise’).

The evidence suggests that riluzole has only a modest impact on survival for people with MND (MND Association 2017). Some people have side effects, most commonly feeling tired or sick, and anyone taking it will need regular testing to check if the drug is affecting their liver function. For more detailed information on treatments and the latest research see the MND Association’s website.

Many people who talked to us were taking riluzole with few or no side effects, although as several pointed out they could not be sure what difference it was making. Some described short-term side effects which had now gone.

She felt nauseous when she first took riluzole, but now has no major side effects.

Age at interview 39

Gender Female

Age at diagnosis 38

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He doesn’t think riluzole makes much difference but continues to take it as he has no side…

Age at interview 45

Gender Male

Age at diagnosis 42

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He had some liver problems taking riluzole, especially when he was also taking minocycline to…

Age at interview 60

Gender Male

Age at diagnosis 56

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People mentioned a range of other side effects, including vomiting; diarrhoea; dizziness or light-headedness; reduced sense of taste; feeling sleepy. Some had tried it and given up, either because of side effects or because they did not think it was worth it. Others had decided not to take riluzole at all, because they thought the benefits were not worth the risk of side effects.

She considered taking riluzole but decided she’d rather not risk having side effects. Quality of…

Age at interview 72

Gender Female

Age at diagnosis 72

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She decided not to take riluzole in case it made her feel really sick. At her age she is not…

Age at interview 76

Gender Female

Age at diagnosis 75

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Some people reported no difficulty getting riluzole prescribed, while others had to negotiate with their GP to get it prescribed. A woman whose husband had MND said she found it upsetting having to ask, ‘Because I would have thought they would have given anything at that particular time to help.’ Since 2001, the National Institute for Health and Clinical Excellence has recommended riluzole for use in people with the ALS form of MND (amyotrophic lateral sclerosis), which is the majority of patients. However, it is often prescribed for other forms too.

Riluzole is recommended for use with MND by NICE. It is not suitable for everyone with the condition, so the consultant will be responsible for assessing suitability for riluzole and prescribing the first course of the drug.

After this, the GP and specialist should agree a shared-care protocol, under which the GP issues repeat prescriptions. In a few areas however, the prescribing and dispensing of riluzole is undertaken by the specialised centre throughout the patient’s illness. Riluzole is available in generic or branded form.The MND Association have an agreement with Dialachemist to enable free home delivery of riluzole. You can find out more about the drug and its delivery on the MND Association’s website.

He is keen to volunteer for any research programmes. He had some problems getting riluzole…

Age at interview 57

Gender Male

Age at diagnosis 50

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People had tried various different medications to help with excess saliva (‘sialorrhea’), including hyoscine (used for travel sickness), amitriptyline (an antidepressant which has a side effect of drying the mouth) and atropine (an eye-drop which can be taken orally). Hyoscine can be applied as a skin patch behind the ear. A steam nebuliser can also help clear thick saliva or phlegm.

Several people were taking antidepressant medication to help with depression or emotional lability (see ‘Emotional lability, depression and low mood’). A new drug has been launched to help manage emotional lability, called Nuedexta. People with MND should ask their neurologist if this is an option for them and if it has been licensed in their country.

Various medications and supplements are being or have been tested in clinical trials around the world. Several people were keen to volunteer for any drug trials or other research programmes and some put a lot of time and effort into finding out what trials were running.

His wife volunteered for trials and they researched the scientific evidence behind different…

Age at interview 59

Gender Male

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Many people felt strongly that volunteering for research was a way to help other people, and it also gave them hope for their own situation. A few questioned why there were not more clinical trials available and research being done to find a cure for MND. (See also ‘Possible causes of MND’).

The MND Association website provides a list of trials in progress and any results available so far on their website. You can also find information here about how to get involved in research.

A few people had investigated alternative unproven treatments, but several warned against organisations or practitioners trying to make a profit out of treatments which were unsupported by any scientific evidence. This is explored further in the ‘alternative treatments’ section of ‘Complementary therapies and alternative treatments’.