May 21, 2004
Multiple sclerosis patients are campaigning for urgent clinical trials to be held into a drug that dramatically eases their symptoms.
Currently MS sufferers are paying hundreds of pounds for low doses of Naltrexone - a drug given free in higher quantities to heroin addicts.
But while it has been found by some MS patients dramatically to improve their lives, it is not universally available on the NHS because it has not been formally trialled for MS.
Now a group of campaigners, including a Norfolk sufferer, are lobbying for trials to begin so that Low Dose Naltrexone (LDN) can be made available to more MS sufferers.
Primary Care Trusts and neurologists are reluctant to recommend its use because of the lack of clinical evidence, though some GPs have issue private prescriptions for the drug.
Linda Elsigood, 47, from Buxton runs an MS support group over the internet called MS Friends with 340 members and is co-ordinating a campaign to help make LDN more widely available.
Last year, Linda was deteriorating rapidly and confined to a wheelchair but says LDN has transformed her life in the few months she has been taking it.
"I am always careful to say that it is not a miracle drug but for me it has made all the difference to the way I am feeling," said the mother-of-two.
"It has given me back a quality of life, I am able to get on with my life, whereas before, it was just a case of surviving day after day and waiting to die."
She is one among 400 patients who get the drug for £25 a month from Welsh GP Bob Lawrence, who introduced it into this country from America where it is more widely used.
She said MS campaigners want clinical trials of LDN but adds that because it is so cheap, no drug company will trial it.
"There is no money in it for the major drug companies," said Mrs Elsigood, who points out that LDN costs a fraction of what other more expensive MS treatments cost.
"We want to lobby the government to raise awareness and we want it available on prescription on the NHS. No-one will prescribe it because there have been no clinical trials but no-one is willing to do clinical trials."
This has left sufferers who benefit from it concerned that their supply may be cut off without warning. Another obstacle is that all the evidence in favour of LDN is anecdotal.
MS sufferers take 3mg of Naltrexone and then move up to 4.5mg, whereas Heroin addicts are given 50mg a day to help with detoxification.
Dr David Dick, consultant neurologist with a number of MS patients at the Norfolk and Norwich University Hospital, said: "Two of my patients are taking it and they are paying for the drug themselves. It is not a drug that I am able to prescribe because there have been no trials and I have to say that the evidence is not terribly persuasive."
Dr Alistair Lipp, Director of Public Health for Great Yarmouth Teaching Primary Care Trust and the lead clinician on the Norfolk-wide Therapeutics Advisory Group, said: "No clinical studies have been carried out into the effectiveness of Naltrexone in treating MS and it is not licensed for this purpose. For these reasons, we are not recommending its use for this condition."
However, Dr Lawrence said there is no significant toxicity or side effects with LDN and MS patients respond well.
He said: "It is available on prescription, both on the NHS and privately, but only to individual named patients on the authority, and the initiative, of the prescribing doctor."
He said many GPs are now prescribing LDN and Health Secretary Dr John Reid has confirmed the legality of its prescription in this way.
"There is promise of some interest by certain consultants who would like to research the method further," he added.
A Department of Health spokeswoman said Naltrexone is licensed and approved, though in what doses or for what condition will depend on the GP or the PCT.
The MS Society is cautious about the benefits of LDN.
Spokesman David Harrison said: "The position we take with any potential therapy is that there needs to be trailling to establish its effectiveness and safety but we are not aware that any trialling is imminent with LDN.
"There is no evidence other than anecdotal evidence. But because this
is attracting a lot of interest, we are talking to a number of researchers
and there are meetings planned over it."
Linda Elsigood can be contacted on 01603 279508 or visit http://groups.msn.com/MSFriends
Mundesley Junior School teacher Martin Read from Coltishall first encountered LDN in a magazine and then researched on the internet for more information.
His GP had given him a private prescription, after initial reservations, and Mr Read, 46, began taking the drug two months ago.
"I noticed that my energy levels went up considerably and immediately, my balance is better, I sleep better, I do not have pain in my legs or muscle spasms.
"That has all given me the confidence to go out. I would never go to the theatre because I would think that when the time came I wouldn't feel well but now we book tickets for shows and concerts."
But he has to pay around £100 for three months supply of his drug from a source in America after faxing his private prescription to them.
However, with the Therapeutics Advisory Group in Norfolk not advocating LDN for MS sufferers, Mr Read fears he may now not have access to a drug that has transformed his life.
He said: "I would like to see people being aware that this drug exists
and GPs being prepared to prescribe it. There is evidence to suggest that
it does work and it should be available on the NHS."
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