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It costs just 82p a day, so why won't the NHS give us the drug that halts MSLow Dose Naltrexone (LDN) costs 300 a year privately Drug is not available on the NHS as it has not been trialled to combat MS
What is Multiple Sclerosis
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This is an uncommon form of the neurological condition which progresses inexorably. But like all variations of MS, in which the immune system turns inward and attacks the nervous system causing a raft of worsening symptoms, there is no cure. You are on your own.
Anything involving walking and standing became difficult. But then came salvation: a little-known treatment which I had been taking for just a month at that point called Low Dose Naltrexone (LDN). I found, like thousands of other British MS patients, that it vastly improved my symptoms.
Yet, incredibly, Naltrexone – traditionally used as a way to treat heroin addiction – has not been licensed for use in MS, so must be bought privately. And the majority of mainstream doctors dispute it is of any use, so trials are unlikely.
I am an Oxford-educated 50-year-old woman and like any intelligent person I read about any new drug trumpeted as a miracle cure in the press, where there is the odd flash of hope. Sadly, I have become used to taking the news of breakthroughs with a hefty dose of cynicism. Any innovation takes an age to reach the market and waiting for drugs to be assessed means patients are left despairing.
Private help: Naltrexone costs 300 a year – just 82p a day – but is not available on the NHS as it has not been trialled to combat MS
I wrote about my condition and its impact on a busy mother of three boys in this newspaper early in 2009. I received a slew of emails from readers, particularly fellow sufferers of MS, who urged me – in sensible, enthusiastic and articulate ways – to try Naltrexone.
It is a class of drug known as an opioid antagonist and works by inhibiting natural feel-good chemicals called endorphins, thus forcing the body to produce more. In turn this reduces painful symptoms and increases a sense of well-being.
It is given to drug addicts in a dose of 50mg, but since 1985 in the United States it has been used by a growing minority of innovative doctors in much smaller doses of 3mg to 4.5mg daily for the treatment of autoimmune disease.
Happy pills: Naltrexone is an opioid antagonist and forces the body to produce endorphins
When I asked, my GP maintained – and still does – that the scientific evidence for the effectiveness of LDN was weak. My neurologist feels the same, and says he would not support its use without further clinical data.
But other medics feel differently. Don’t forget that the drug is available on the NHS already, just for different conditions.
‘Three Health Secretaries have given written approval of its use on the NHS, yet so many GPs and neurologists still refuse to prescribe it,’ says Dr Bob Lawrence, who is listed on the LDN Research Trust website.
He has a personal history of MS and has prescribed LDN since 2000, crediting the resolving of his medical problem to the drug.
‘At less than 300 a year – about 82p a day – the cost is minimal compared with, for example, beta interferon, another drug for MS which costs between 9,000 and 12,000 a year,’ he says. ‘The reason no one prescribes it is because it hasn’t been trialled.’
I understand the refusal to prescribe new drugs without scientific basis but all I was left with was an airy suggestion to take extra Vitamin D. So I bought LDN through a website recommended by the LDN Trust. It asked for written confirmation from my doctor of my diagnosis, and I took my first dose in bitter-tasting liquid form in July 2009. What did I have to lose
I didn’t notice any immediate difference to my left leg, but at least the day was not punctuated by frequent dashes to the loo.
The next morning I realised I had slept better than usual because I hadn’t been up during the night. Not once.
Walking to work the following week my leg had stopped dragging as it had been doing. The effects were minor, but noticeable, both physically and mentally. So I have continued to take LDN.
It feels positive to be taking something hopeful. LDN isn’t a miracle cure, and it’s not held up as one. Now my left leg is weaker. I can’t walk as far without getting tired. But, almost four years since I started taking it, it hasn’t got worse.
Apart from a yearly check-up with my neurologist, I don’t think about my condition. I still limp but the rest of my life – my sons, a husband, part-time work, holidays – continues.
What is so galling is that LDN supporters are forced to come across as evangelical nutters. Whatever happened to patient choice