Double blind trial LDN for MS

Discussion in 'Fibromyalgia Main Forum' started by tansy, Aug 25, 2008.

  1. tansy

    tansy New Member

    Could low doses of a drug for alcoholics ease the agony for sufferers of MS?

    By Sarah Spendiff
    Last updated at 9:13 PM on 25th August 2008

    Carefree: Jon Salisbury before he was diagnosed with MS

    For some multiple sclerosis sufferers, just getting out of bed is tough.

    For 43-year-old father-of-three Jon Salisbury, getting up took up to an hour and involved the help of his wife or his children.

    'At more than 6ft tall, having to haul me out of bed is no mean feat.

    'Once I had got up, which could take half an hour, I was dragged to the top of the stairs as I couldn't bend my legs.

    'I then had to shuffle down them on my backside, like a child,' he says.

    Once downstairs, the ordeal wasn't over. Jon, a writer, had to haul himself into a chair next to the stairs, which would then be pulled over to the computer where he tried to focus long enough to write a few sentences.

    'One of the aspects of MS is not being able to concentrate and, with a family to support, that was very frightening,' he says.

    Jon, who has since split from his wife, lives in Kings Langley, Hertfordshire, with his children aged between 15 and 21.

    He was diagnosed with MS in 1995. By 2000, he couldn't work full-time and had to rely on a wheelchair to get around.

    His neurologist could offer only the two conventional types of treatment on the NHS: steroid injections which reduce inflammation or the drug interferon, which works on MS patients' dysfunctional immune system.

    Jon wasn't keen to take more steroids as his dose was already high, and he disliked the flu-like side-effects.

    He discovered a drug called Naltrexone on the internet. Anecdotal evidence showed this to be effective in treating MS.

    Within three months of taking it, he could leave his wheelchair and get about with a walking stick. Jon's concentration also improved.

    'I got some independence back,' he says.

    Naltrexone is licensed to treat alcohol and drug dependency; in large doses it blocks the pleasure receivers - opiate receptors - in the brain, dulling cravings.

    It was Dr Bernard Bihari in the 1980s, who found that, at low doses, it could improve MS patients' immunity.

    Dr Bihari has now retired, but his work is continued by Dr David Gluck, a specialist in internal and preventive medicine in New York.

    He says: 'MS patients have a dysfunctional immune system which attacks its own tissues.

    'In MS sufferers, the insulation surrounding nerve cells becomes a target. This can cause partial paralysis and muscle spasms.

    'Low-Dose Naltrexone (LDN) briefly obstructs the effects of endorphins, the brain's natural painkillers.

    'This increases the production of these same endorphins, stimulating the immune system and reducing the activity of the MS.

    'It's possible patients with MS who use LDN will have no further progression of their illness. They may also gain relief from some symptoms.'

    But the drug is seldom prescribed by doctors in the UK, where there have been no clinical trials for its use in treating MS.

    Some patients get it by private prescription - £15 for the liquid form, £24 for capsules per month.

    It is hoped that the first placebo-controlled, double-blind trial will begin in Glasgow later this year.

    It is being lead by GP Dr Tom Gilhooly with consultant neurologist Dr Jonathan O'Riordan.

    So what do experts think?

    'Potential treatments like Naltrexone have become popular without proper trials because, in the past, there has been a vacuum in effective MS treatments,' says Professor Alan Thompson, a professor of neurology and MS expert at London's National Hospital for Neurology and Neurosurgery.

    And then there's the issue of the drug being licensed.

    Dr Bob Lawrence, a GP in Swansea, has been taking LDN for his MS for eight years.

    'No drug company will apply for a license to prescribe Naltrexone at a low dose for MS, because to do so they will have to invest possibly millions in a trial to prove it is safe and it works.'

    However, the results of these trials are of little consequence to MS sufferers such as Jon, who don't need convincing.

    He bought it on private prescription through a doctor he was directed to by the LDN Research Trust.

    'I can now move around the house on a frame and need the wheelchair only for longer outdoor trips,' he says.

    To get LDN, a patient needs it prescribed 'off-label' - where a drug is licensed for use in treating one illness, but is prescribed for another.

    Dr Laura Bell, The MS Society's research communications officer, says: 'The MS Society was initially reticent on LDN as we felt there wasn't enough clinical evidence to support it.

    'However, as more anecdotal evidence comes to light, there is a clear need for research to prove or disprove claims, and we support this.'

    Jon hopes one day he will walk unaided again. Only time will tell, but LDN has given him something many with MS don't have - hope.

    • LDN Research Trust: 0871 989 96 66. Multiple Sclerosis Resource Centre (MSRC):