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Choices leaflet: Benefits and MS

Choices leaflet: Bladder and bowel

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Choices leaflet: Exercise

Choices leaflet: Fatigue

Choices leaflet: Is it MS?

Choices leaflet: Low Dose Naltrexone (LDN)

Choices leaflet: MS and work - practical solutions

Choices leaflet: Paediatric multiple sclerosis

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Choices leaflet: Primary progressive multiple sclerosis

Choices leaflet: Social services

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Choices leaflet: Therapy centres (UK & Ireland)

Choices leaflet: Types of MS

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Choices leaflet: Low Dose Naltrexone (LDN)

LDN has been used in the treatment of MS in the USA since 1985 and more recently in the UK. Naltrexone is a drug referred to as an opiate antagonist. Its normal use is to treat people addicted to drugs such as heroin or morphine. The dose used for this purpose is usually between 50 and 150mg per day. The low dose method was devised and later developed, by Dr Bernard Bihari a neurophysician from New York, USA. Dr Bihari was qualified in Internal Medicine, Psychiatry and Neurology. Sadly, Dr Bihari passed away in May 2010; but his website can still be accessed at www.lowdosenaltrexone.org. 

How to take LDN

The introductory dose is usually 1.5mg per day for the first two weeks of treatment, increasing by 0.5mg every two weeks until the individual finds a suitable dose, as the optimum dosage varies from person to person. If there is an increase in symptoms when taking a higher dose, it may indicate that the dose is too high. Lower the dose and improvements should become apparent. 

Those taking it have experienced a range of benefits, including reduced spasm and fatigue, improvements in bladder control, heat tolerance, mobility, sleep, pain, tremor and other symptoms. The two main symptoms that appear to improve most significantly are muscle spasm and fatigue. 

LDN can be taken at any time of the day. If a dose is missed; carry on as normal.

DO NOT take a double dose. LDN is not thought to be harmful or addictive and it does not appear to have a negative effect on Disease Modifying Drugs as was previously thought. 

It is thought that LDN works best when combined with a dietary approach to managing MS. For example, looking at food intolerances, specific MS diets and by supplementing where necessary. 

How naltrexone works

The benefits of this drug are apparently due to the temporary inhibition of endorphins (a natural pain-killer, produced in the brain). This results in a reactive increase in the production of endorphins, which would expectedly result in a reduction in painful symptoms and an increase in the sense of wellbeing. In addition, increased levels of endorphins would also be expected to stimulate the immune system, promoting an overall increase in the numbers of T lymphocytes. This increase in T-cell numbers apparently restores a more normal balance of the T-cells so that the effects of the disease process are significantly reduced. 

Contrary to the common belief that MS is due to over-activity of the immune system, it is thought that MS may actually occur due to a reduction in immune system activity and may be the reason why LDN is effective as a treatment. Specifically, it is the reduction in the number of the suppressor T-cells within the immune system that permits the CD4 helper T-cells to do damage. Thus, during an acute relapse the overall numbers of T-cells are reduced, the normal balance of helper T-cells and suppressor T-cells is disrupted and the CD-4 helper T-cells tend to predominate. This is most pronounced during an acute relapse but a similar situation occurs, although perhaps to a lesser extent, in chronic progressive MS. In the presence of LDN it has been demonstrated that the number of T-cells may increase by more than 300%. When the numbers of T-cells are initially increased, the overall predominance of CD4 helper T-cells at this time may expectedly increase the intensity of the MS, therefore temporarily increasing some symptoms. However, as the number of T-cells continues to increase, the normal balance of suppressor to helper T-cells is   restored, the activity and intensity of the disease process is reduced and symptoms once again diminish. 

In those who have the relapsing-remitting form of MS, the number of relapses is reduced, and the rate of progression of the disease is diminished. In chronic, progressive MS (either primary or secondary) there appears to be a similar reduction in the progression of disease symptoms. There may be a short-term increase in symptoms, for example during periods of infection or stress, arising from previously active lesions already present in the brain or spinal cord. 

Despite these promising findings it must be emphasised that a positive beneficial response to this treatment cannot be assured or guaranteed. 

Side-effects

LDN improves some symptoms of MS immediately – particularly bladder issues. However, for some symptoms it can take 6-9 months for the treatment to work effectively. In some cases it can take up to 12-18 months to see if the treatment is actually working. For example, some people feel that they are not seeing any reduction in symptoms, although they may be benefitting from lessened disease progression. If this person then stopped their LDN treatment and suddenly became worse, it would show that LDN is in fact working very well to halt their disease progression. 

Introductory symptoms on starting this treatment may include; disturbed sleep (occasionally with vivid, bizarre and disturbing dreams), headache, stomach pain, tiredness, fatigue, spasm and pain. These increased symptoms are usually temporary and should fade and then disappear within the first week of treatment, after which they should be replaced by improvements in specific symptoms.

In less than two percent of cases, these increased symptoms may be more prolonged, lasting perhaps for several weeks. Rarely, symptoms have persisted for two or even three months before the appropriate beneficial response is gained.

In this situation, an ultra-low dose may be introduced to provide a gentle introduction to the method. Occasionally, other transient symptoms have included increased severe pain and spasm, headache, diarrhoea or vomiting. These additional symptoms would appear to be associated with previous, frequent use of strong analgesics, which effectively creates an addiction and dependency thereby increasing the body’s sensitivity to pain. Constipation may also be a problem and may take two to three weeks to resolve naturally, during which time some additional supportive measures may be required.

If lactose filler is used in the capsules, some individuals may find they are sensitive to this sugar and after a few weeks of treatment they will develop diffuse, but persistent muscle or joint pain. This may be avoided by using an alternative filler, such as calcium carbonate or Avicel (methyl cellulose).  When making the decision of which to choose, Avicel may be the preferred choice as despite dispersal testing showing that calcium carbonate capsules will dissolve as quickly as Avicel, there has been much discussion suggesting that calcium carbonate filler may be subject to compaction problems, which can potentially reduce the dispersal and absorption rate. 

The long term use of LDN has not yet been statistically evaluated by a trial. According to Dr Bob Lawrence, men aged between 20-30yrs sometimes have an erratic response to LDN. This is thought to be due to raised testosterone levels; therefore it can take longer to adjust. 

Special Precautions

LDN should NOT be used at the same time as morphine treatment or a derivative of morphine. 

On starting LDN, any recent use of opiate analgesics will result in an opiate withdrawal syndrome with increased pain, muscle spasm and possible vomiting/diarrhoea. It is therefore advisable that any opiate analgesics be discontinued at least two weeks before starting LDN. These include drugs such as co-codamol, oxycodone, fentanyl and buprenorphine patches. Tramadol CAN be used, however they must be taken 4-6 hours apart. The use of LDN at the same time as sustained release pain killers is NOT recommended. 

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

Availability of Low-dose Naltrexone (LDN) in the United Kingdom.

Unfortunately, many GP’s and Neurologists seem unwilling to prescribe LDN as they have little experience or knowledge of Naltrexone being used either at such a low dose or for the treatment of MS symptoms. Nevertheless, with the availability of more public information on LDN, resulting in an increase in patient demand, gradually more doctors are prescribing. 

For more information on LDN you can contact the LDN Research Trust on:

Tel: 0844 4145 295

e-mail: contact@ldnresearchtrust.org

They will be able to advise you further.

There is also an information pack available from the LDN Research Trust website: http://www.ldnresearchtrustfiles.co.uk/docs/LDN%20Information%20Pack(1).pdf  The pack contains information on LDN to present to your GP in order to help in obtaining a prescription. 

Following its successful use in the USA and many other countries in the treatment of multiple sclerosis since 1985, LDN is produced in response to private or NHS prescriptions, by a company in the UK: 

Dickson Chemist,35 Mitchell Arcade, Glasgow, G73 2LS

E-mail: homedeliverypharmacy@yahoo.co.uk  Tel: 0141 531 4124

Dickson’s produce a liquid suspension, (at whatever dose required) for approximately £18.50 per month of treatment, including postage. They also supply LDN capsules at either 3mg or 4.5mg doses at £30.00 for 30, including postage. 

This much reduced cost will hopefully encourage more doctors to prescribe LDN.

If you are able to obtain a prescription for LDN from your local GP you will be able to get it dispensed, as described above, at the standard prescription rate. Although LDN is well known in General Practice, it is used in higher doses for conditions such as cancer, AIDS or chronic infection. It is not on the NHS blacklist of drugs. GP’s are often unfamiliar with LDN, so please take whatever information you have with you in order to familiarise your doctor with this method of treatment. 

Your GP may suggest that LDN is not licensed for the purpose of treating MS, but he or she, will be aware that many other drugs are already used for treating this condition although they remain unlicensed for that purpose. Examples include amantadine, gabapentin and amitriptyline. There is therefore no valid reason why LDN should not be used in the treatment of MS. 

It is worth pointing out that LDN at a low dose is virtually non-toxic and once the method is established, has absolutely no side-effects.  At just one capsule per day, it is simple to administer and compared to many of the conventional alternatives, considerably less expensive. 

If you obtain a supply from your GP please remember to specify the nature of the filler (Avicel) and the dose that you require. 

If you are unable to obtain a prescription from your GP; e-med offer an LDN 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/ldn.php 

Republic of Ireland

If you are an Irish resident and have a prescription you can obtain LDN from:

Quinns Pharmacies, Bridge Street, Gort, Co. Galway

Tel: +35391 631272

or Granary Court, Edenderry, Co. Offaly

Tel: +35346 9773005.

4.5mg retails at approximately 30 Euros. 

Obtaining LDN in the USA and Canada

One of the first pharmacies to supply LDN in the USA was:

Bigelow Pharmacy,6th Avenue, New York.

Tel: (212) 533 2700

Bigelow will ship it anywhere, in the US or to other countries, and will accept prescriptions from any licensed physician. They prepare LDN using any filler; lactose, calcium carbonate or hypromellose or any other preferred filler. 

If able too btain a private prescription -the pharmacy most commonly used appears to be:

IRMAT, Park Avenue, New York.

Tel: 001 212 685 0500

You can scan or fax the prescription to them – fax: 001 212 532 6596.

If you e-mail they require you to send your mailing address, phone number, date of birth and indicate if you have any allergies to any medications or if you are lactose intolerant. Their e-mail address is info@irmatpharmacy.com 

One pharmacy in Ontario, Canada that also supplies LDN is Smith’s Pharmacy:

Smith’s Pharmacy and Integrative Medical Clinic

3590 Rutherford Rd

Vaughan, ON, L4H 3T8

Tel: 905 553-1280

e-mail info@smithspharmacy.com 

Reports have been received from patients that their pharmacies have been supplying a slow release form of naltrexone. They should be instructed NOTto provide LDN in an "SR" or slow-release or timed-release form. Unless the low dose of naltrexone is in an unaltered form, which permits it to reach a prompt "spike" in the blood stream, its therapeutic effects may be inhibited.  

Updated June 2014