Motor neurone disease
A guide for patients and carers
Treatment
Trials of many different treatments are taking place all over the world. Doctors in some countries have used high doses of vitamins C and E, together with selenium
and have reported benefits for some patients. Some patients have found complementary therapies helpful in relieving some of the symptoms. However only a few complementary therapies have been through the sort of scientific testing that is required for conventional treatments.
New treatments
Two recent drugs have been shown to have some effect in delaying the progress of the disease. They are Riluzole (Rilutek), made by Rhone-Poulenc Rorer in France, and IGF-1 (Myotrophin), made by Cephalon in the USA. Riluzole is available for use in most European countries, including Britain, and in North America. Myotrophin has not been licensed in North America or in Europe because its effects appear to be very slight.
Riluzole
This is taken in tablet-form in a dose of 50mg twice daily. In clinical trials in Europe and North America it has been shown to increase life expectancy by between three and six months in the average person with the disease after it has been taken for three months and if treatment is then continued. There is no information about the quality of this increased life expectancy, since this was not studied in the clinical trials. The trials were not designed to show if the drug was of any benefit in reducing the rate of decline in muscular strength during the course of the disease. Riluzole has few side effects, although some people feel more tired and a skin rash may develop in rare cases. There is also a tendency for liver function tests to become abnormal, something which your doctor will be aware of and will monitor. It is rarely necessary to stop treatment because of these side effects. This drug can be taken in combination with other treatments.
The drug is probably best used at the early stage of the disease, before there is severe disability, in the expectation that it will prolong this phase of the illness.
It has been pointed out that Riluzole is expensive and that its effect on MND is relatively small. Some health authorities in the UK have decided not to sanction its use, saying that expensive treatments for other diseases, such as cancer, are more important. This form of rationing is the subject of intense debate in the climate of limited resources for health care. Several other European countries such as Belgium, and Australia, have taken a similar position and the drug is not available through state-funded health care arrangements in these countries, although in other countries such as France, Germany, Spain and the USA it is widely available.
A new government organisation, the National Institute for Clinical Excellence (NICE), has been set up to take a close look at the effectiveness of a range of treatments, especially where there have been instances of "post-code prescribing", i.e. where the availability of a particular treatment on the NHS depends on where you live. Riluzole is one of the treatments that NICE will be looking at during the course of the year 2000.
Other drugs
There are several other drugs either currently in clinical trial or at earlier stages of development. In addition, there are several drugs currently used in the treatment of other disorders, such as Gabapentin (Neurontin, Parke-Davis), that have been tried, but without significant benefit in MND.
Experiments on animals suggest that vitamins C and E may have a small beneficial effect on people with the disease, but so far, no formal clinical trials have been conducted in people with motor neurone disease to confirm this. Some antioxidant agents are also being tried in the US and Germany and some benefits have been reported. Another untried agent is creatine, a naturally occuring brain and muscle substance.
Clinical trials
People with MND will naturally be concerned about current research into the disease. Some will be offered the chance to participate in clinical trials. These trials are controlled by strict regulations and entry criteria. The participation of people with MND in research is an important part of the search for new and more effective treatments.
Nutrition
A good diet is important for maintaining overall health and to reduce the likelihood of developing infections and other symptoms such as pressure sores. Researchers are looking closely at diet to see what benefits there may be for people with MND.
Contents
- Introduction
- What is motor neurone disease?
- What are the symptoms?
- Is there only one kind of MND?
- Who gets MND?
- How is MND diagnosed?
- What do the tests tell the doctor?
- Treatment
- Dealing with the effects of MND
- How will life be affected?
- Useful equipment
- Conclusion
- MND organisations
- Other organisations that may be able to help