Could low doses of a drug for alcoholics ease the agony for sufferers of
MS?
By Sarah Spendiff
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 sup****t, that was very frightening,' he says.
Jon, who has since split from his wife, lives in Kings Langley,
Hertford****re, 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 sup****t it.
'However, as more anecdotal evidence comes to light, there is a clear need
for research to prove or disprove claims, and we sup****t 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.
http://tinyurl.com/5779yh
http://www.ldnresearchtrust.org/
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