LDN and me
I haven’t blogged for a year, mainly because I’d said what I wanted to say, and in doing so hope I helped someone somewhere. To quickly summarise, I have told readers of the things done by Professor George Jelinek in Australia in slowing or ceasing the downward progression of MS – by his building on and refining the seminal work of the great Canadian/US neurologist Dr Roy Swank; I’ve written about George’s book and, for the many who have travelled here from across the world, his life-changing (and life-affirming) 5 day retreats in Australia and New Zealand – of which I believe there’s nothing similar held in the world; and I have also written about stem cells / oils / walking developments / books / etc / and about MS people who have made extraordinary improvements in their own lives and those of others. What I haven’t written about is drugs.
I am not a great fan of drugs, but I accept the reality that if they’re useful they’re useful. I inject Copaxone daily, preferring it to any of the interferons, and thereby avoiding side effects such as flu-like symptoms. Regarding the injectable drugs, for those who can get hold of it I draw your attention to an article in the prestigious medical journal The Lancet, Vol 7, October 2008 at page 903 which compares the efficacy of the main preventative drugs for Relapsing Remitting MS. When you hear that one injectable drug is far superior to another, please read that article, discuss it with your doctor and make up your own mind. I am also watching with interest the new generation of oral drugs becoming available.
It was however about an unconventional, but useful, drug that I wanted to write today. You might know that naltrexone, a drug prescribed for heroin addicts, has in the last decade gained an reputation across the world among the MS community (in particular, but also among autoimmune communities in general) for its efficacy in low dose form (ie Low Dose Naltrexone, or LDN). Heroin addicts are usually prescribed daily doses of naltrexone at 100 to 150mg, while LDN is usually taken at 3 to 4.5mg per day. Naltrexone is an opioid antagonist. In the higher doses it works by negating the effects of heroin and all opiates (including some analgesics), without being addictive. In the case of heroin for example, addicts still get the craving (unlike methadone which reduces the craving but is addictive) however naltrexone blocks the receptors which give the “high” and the heroin gives no satisfaction.
As I, in my (non-medically trained) mind understand it, naltrexone in low dose – LDN – when taken at night in fast-release form shuts down for 4 to 6 hours the body’s own opioid peptides which it produces during sleep to give our normal small natural high for the day ahead (this is one of the major benefits of sleep), and the body’s cells react to this (LDN-induced) temporary stoppage of a natural function by increasing the amount of opioid peptides produced, thereby (by a process of homeostasis, or return to normal) increasing cellular changes that promote natural healing and reduce inflammation. It is, in effect, an induced over-compensation by the body of the stopping of a natural process.
I hadn’t wanted to take any further drug. I saw it as introducing a toxin to a system I was trying to keep as clean as possible for maximum recovery. I was however experiencing increasing spasticity in my legs and (oh joy) an increase in bladder urgency. So, because of my interest in research, I began researching LDN for consideration of use in preference to a drug my neurologist suggested. I became convinced LDN was for me the better drug if I needed to take one.
What I hadn’t counted on was the hostility of some (not all) medical practitioners to the drug. This is perhaps understandable and, to be fair, probably well-meaning on their part. LDN, ie low dose naltrexone, has not been approved for use in humans. The approval of the US Food and Drugs Administration (FDA) is seen as a benchmark required for a drug to be viewed widely as being safe and efficacious. I take 3mg of LDN daily. The same drug however, naltrexone, received US FDA approval in 1984 as being safe for use by humans at 50mg .. ie 17 times the strength I take.
The reasons LDN is seen as unproven for safe use comes from the fact naltrexone is an “old” drug. It was first synthesised in 1963 and was used in US President Richard Nixon’s War on Drugs announced in 1971 which included commendable initiatives to treat drug abuse. As an old drug, no pharmaceutical giant owns its patent and many laboratories are producing it. No one organisation or person will make their fortune should it be found to be significantly useful for treating any existing or new medical conditions. Similarly the flipside is that to now obtain US Food and Drugs Administration (FDA) approval no one organisation or person will fund the millions of dollars required to gain that approval. Without FDA approval LDN has languished, and with no money in it the marketing representatives of major drug companies are not recommending it to medical practitioners. As a result those who could benefit from the drug are not being prescribed it.
Meanwhile its reputation grows. LDN has certainly helped me, with bladder urgency almost disappearing as a problem within weeks and psoriasis improving markedly. It has few reported side effects. One is temporary sleep disturbance. It is possible I had interrupted sleep for a week or two – but that’s hard to know as we bought a pup the week I was prescribed the drug, and “Squirter” (his nickname) would let me know about his own bladder urgency issues at approximately 2am each night!
A quick history of how the drug first came to be seen as useful for treating MS begins with a 1980’s pioneering researcher Pennsylvania State University’s Dr Ian Zagon who spectacularly found that naltrexone at low doses decreased cell proliferation and increased production of the body’s natural opioid peptides – and a Harvard educated neurologist Dr Bernard Bihari (director of the Division of Alcoholism and Drug Dependency at the State University of New York) working with the first wave of Acquired Immune Deficiency Syndrome (AIDS) patients became aware that when he gave naltrexone to those of them who had heroin addictions their autoimmune problems diminished.
The drug, because it is out of patent, is cheap. It costs me AUD$76 for 100 tablets to have compounded, that’s less than $25 a month (the Australian dollar being presently at parity with, or a little over, the US dollar). This is an insignificant amount compared to my injectable drug, which thankfully the Australian national health system provides. LDN is reportedly therapeutic for many autoimmune diseases (of which there are many, Parkinsons, MS and AIDS being a few) and is currently being evaluated as a cheap and useful drug for the fight against AIDS in the Developing World. I have the drug compounded by a reputable “green” pharmacy interstate in Australia, importantly with a non-lactose filler (avicel).
A very early, largely anecdotal, recommendation of LDN appeared on the website of a Brisbane (my town) woman Cris Kerr with an interest in the subject. More recently however there are 2 very worthwhile recent books published about LDN – namely Up the Creek with a Paddle by Mary Boyle Bradley and The Promise of Low Dose Naltrexone Therapy by Elaine Moore and Samantha Wilkinson. Both books are readily available from shops or online. The first is an anecdotal account by a woman whose husband has MS (and the author is now a passionate international advocate of the drug), and the latter is a well-researched and medically informative book on the history and effect of the drug. That book (by Moore/Wilkinson) also contains a foreword by Dr Yash Pal Agrawal of the Department of Pathology, University of Iowa who wrote an early article “Low Dose Naltrexone therapy in Multiple Sclerosis” published in the journal Medical Hypotheses (2005) 64, at pages 721–724. An abstract of his article is on the excellent medical database PubMed, where he states: “There is overwhelming anecdotal evidence, that in low doses naltrexone not only prevents relapses in MS but also reduces the progression of the disease.” (my emphasis)
My experience is that if a person wants LDN they must actively seek out a prescription and be prepared to argue the drug’s potential benefit – which is not too difficult with the mounting evidence in favour of LDN. I did in my case have to go further than my family physician, and I suggest that neurologists are more wedded to more “established” drugs. I started on 1.5mg for a month then alternated between 1.5mg and 3mg for a month before moving permanently to 3mg. I may ultimately seek to increase that dose as the optimum dosage is often argued to be 4.5mg per day. But for the moment I am content at 3mg, and have found it a highly useful, non-toxic, drug with no side effects.
Finally, please see this website on the side effects of LDN, including a possible temporary increase in symptoms of MS. It is worth reading before embarking on LDN, and much of it accords with the information given to me by my own trusted medical adviser.
All the best, KB
ps: another book, perhaps worth reading, is “Google LDN” by Joseph Wouk .. I’m yet to read it.