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Choices leaflet: Bladder and bowel

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Choices leaflet: Children with MS

Choices leaflet: Complementary and other therapies

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Choices leaflet: Disease modifying drugs

Choices leaflet: Disabled living centres

Choices leaflet: Drug therapies

Choices leaflet: Low Dose Naltrexone (LDN)

Choices leaflet: Emotional reactions to MS

Choices leaflet: Exercise

Choices leaflet: Fatigue

Choices leaflet: Is it MS?

Choices leaflet: Pain

Choices leaflet: Primary progressive multiple sclerosis

Choices leaflet: Symptoms

Choices leaflet: Therapy centres (UK & Ireland)

Choices leaflet: Types of MS

Choices leaflet: Tysabri

Choices leaflet: Useful organisations

Choices leaflet: Visual symptoms

Choices leaflet: Vitamin D

Choices leaflet: What is MS?

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Choices leaflet: Low Dose Naltrexone (LDN)

Naltrexone is drug developed initially to treat addiction to opiate-based drugs, such as heroin or morphine. It belongs to a class of medications called opiate antagonists.

Naltrexone delivered in lower doses – Low Dose Naltrexone (LDN) – has been used in the USA to treat the symptoms of autoimmune conditions, such as multiple sclerosis, since 1985, and more recently has been used in Europe and the UK.

The low dose method of taking naltrexone was devised and developed by the late Dr Bernard Bihari, from New York. Dr Bihari was qualified in Internal Medicine, Psychiatry and Neurology.

LDN is advocated as a treatment for the symptoms of many conditions including Crohn’s disease, fibromyalgia, Chronic Fatigue Syndrome and coeliac disease –conditions with an autoimmune origin, or potential autoimmune origin.

How naltrexone works

As an opiate antagonist, naltrexone is thought to inhibit endorphins – the body’s natural painkiller. It is believed that by inhibiting endorphins, the body reacts by producing more. This increase in endorphins reduces pain and increases a sense of wellbeing.

Dr Bihari’s initial research showed that increased levels of endorphins stimulated the immune system and promoted an increase in a type of white blood cells – T-lymphocytes. Although not proven, it is believed people with autoimmune conditions have low levels of T-cells, so an increase in T-cells balances the immune system.

Many people with MS report significant improvements in their symptoms – particularly fatigue, pain, mood and spasm – after they start taking LDN.

LDN must be prescribed by a doctor and is safe to take under medical supervision for the treatment of MS symptoms.

Research into LDN

There have been many studies into the safety and effectiveness of LDN as a treatment for MS, and other conditions.

A pilot trial of 40 people with primary progressive MS conducted by Dr M Gironi found naltrexone to be well-tolerated by the patients, who reported an improvement of their symptoms – especially in relation to spasticity.

The study was published in September 2008 in the Multiple Sclerosis Journal.

In 2011, Dr Rahn looked at experimental autoimmune encephalomyelitis (EAE) – an animal model for MS in mice – and the effect of LDN. Published in Brain Research, the study proved that after 60 days, the progression of EAE was halted in mice treated with LDN, and neurological deficits reversed.

Another 17-week randomised trial, where some people were given LDN, and some a placebo, looked into the effects of LDN in relation to quality of life. Ninety-six people were enrolled in the trial – some with relapsing-remitting MS and some with secondary progressive MS. This trial, conducted in 2010 by Dr N Sharafaddinzadeh published in the Multiple Sclerosis Journal, demonstrated the safety of LDN.

However, the results on LDN’s effect on quality of life (as measured by physical and mental health) was not clearly proven, with no statistically significant differences shown between the LDN-dosed group and the placebo group.

Research into LDN is also taking place for other conditions. In 2007, a 12-week trial into LDN’s effectiveness in the treatment of Crohn’s disease, conducted by Prof. J Smith and published in the American Journal of Gastroenterology, reported that 86 per cent of the 17 people enrolled in the trial showed a reduction in the activity of their condition as demonstrated by endoscopic examination.

In 2009, a study conducted by Dr Younger from Stamford University, and published in Pain Medicine, looked at LDN as a treatment for the pain associated with fibromyalgia. The study showed a thirty percent reduction in pain symptoms in people treated with LDN, compared to the placebo.

Accessing LDN in the United Kingdom

Naltrexone is used in the UK to manage opiate dependency, but LDN has not been licensed for the treatment of MS symptoms by the National Institute of Health & Care Excellence (NICE). The use of LDN to manage MS symptoms is sometimes described as ‘off-label’, but LDN is by no means ‘blacklisted’ by the NHS.

Unfortunately, many GP’s and neurologists are cautious about prescribing LDN as they have little experience or knowledge of naltrexone being used for the treatment of MS symptoms.

GP’s are often unfamiliar with LDN and the LDN Research Trust have published an information pack for you, if you are considering LDN. The pack also contains information for your GP.

If you are able to obtain a prescription for LDN from your GP you will be able to get LDN dispensed at the standard prescription rate.

The LDN information pack can be found at:
http://www.ldnresearchtrust.org/ldn_fact_sheets

For more information on LDN you can contact the LDN Research Trust on:
Tel: (0844) 4145 295
E-mail: contact@ldnresearchtrust.org

If you are unable to obtain a prescription from your GP, E-med – a private company – offer an LDN private prescription service. You will need to register with E-med (current annual charge is £20) and provide them with a letter from your GP confirming that you have MS. There is a charge of £15 per prescription issued (usually for a 3 month supply). Further details can be found at: www.e-med.co.uk

If you have a private prescription, you can obtain LDN from some pharmacies. Another supplier of LDN is Dickson Chemist, based in Glasgow. Dickson Chemist produce a liquid suspension of LDN at whatever dose required for approximately £18.50 per month of treatment, including postage.

They also supply LDN capsules of different strengths at £30.00 for 30 capsules, including postage.

Dickson Chemist
35 Mitchell Arcade, Glasgow, G73 2LS
www.dicksonchemist.co.uk
E-mail: homedeliverypharmacy@yahoo.co.uk 
Tel: (0141) 531 4124

If you are a resident of the Republic of Ireland and have a prescription, you can obtain LDN from:

Quinns Pharmacies
Bridge Street, Gort, Co. Galway
Tel: (091) 631272

or Granary Court, Edenderry, Co. Offaly
Tel: (046) 9773005

It is important to note, that LDN obtained from sources other than a prescribing chemist, cannot be guaranteed to contain LDN, or be safe. This is particularly true of LDN obtained from unregulated sources on the internet.

How to take LDN

Some people with MS report that LDN improves their symptoms of MS immediately – particularly bladder symptoms. However, for some people it can take 6-9 months for the treatment to be seen to work on some symptoms. In some cases it can take up to 12-18 months to see if the treatment is actually working.

Your prescribing doctor will usually start the treatment of LDN at a very low dose and increase this gradually, making sure any increase in dose does not cause some of the more common adverse effects.

Some of the common adverse effects from taking LDN are:

• Increased fatigue
• Sleep disturbance, if taken at night time
• Increased spasticity
• Gastrointestinal upsets
• Nausea or constipation

Many people starting on LDN do not experience any adverse effects. Some people experience a temporary worsening of their MS symptoms such as feeling more fatigued, or increased spasticity, after starting treatment on LDN.

Sometimes the adverse effects can be severe, or last longer than usual – up to several weeks. If you do experience adverse effects after starting LDN, talk to your prescribing doctor about reducing the dose for a period, before increasing it again.

LDN is available as a liquid and is the most common way LDN is administered. It is taken with a syringe of the same type used to give medications to infants. LDN is available as a capsule at higher strengths.

LDN is also available as sublingual drops, which are a higher dose to liquid LDN and are used by people who have trouble swallowing. The drops are placed under the tongue with a dropper.

LDN can be taken at any time of the day, although some people report sleep disturbance if they take LDN before bedtime.

If a dose is missed, carry on as normal – do not take a double dose.

Special Precautions

If you have renal or liver failure, you should only start LDN after talking to your consultant.

If you are taking herbal medicines, or multiple medications, you should again, only start LDN after talking with your GP.

LDN is compatible with steroids and the disease modifying drugs for MS. Talk your MS Nurse or neurologist before starting LDN.

Some medicines are not compatible with LDN – particularly opiate-based painkillers such as morphine.

On starting LDN, any recent use of opiate-based painkillers can result in an opiate withdrawal syndrome. It is therefore advisable that any opiate-based painkillers be discontinued at least two weeks before starting LDN, under the supervision of your GP. These include drugs such as co-codamol, oxycodone, fentanyl and buprenorphine patches.

If you are considering taking LDN, you should provide the prescribing doctor with your full medical history.

When starting the treatment please report any untoward or adverse effects immediately to your prescribing doctor so the treatment process may be re-assessed and modified if necessary.

Updated November 2014