Low dose naltrexone (LDN) has been circulating in the multiple sclerosis "underground" for a couple of decades as a purportedly effective treatment for MS, both (according to case reports and anecdotes) slowing disease progression and taming symptoms of some people with MS. It now looks like it may be really emerging as a potential treatment for other autoimmune disorders, including fibromyalgia. I have been keeping close tabs on the research around low dose naltrexone (or LDN), as well as taking it myself (as many of you know) for my relapsing-remitting MS. I have been pleased with my progress and am happy to see that people with other diseases may benefit, too.
In a very small study (10 women) of low dose naltrexone and fibromyalgia, women with a 10-year history of fibromyalgia were first given a placebo for two weeks and then were switched to low dose naltrexone. During the placebo period, the women reported their symptoms improving by 2.3%. During the low dose naltrexone period, that number jumped to an average of 30% improvement in symptoms such as pain, fatigue and heat intolerance. However, four of the women did not improve significantly with low dose naltrexone.
There were few side effects and the drug is inexpensive. The study was published in the April 2009 edition of Pain Medicine.
Must read: Low Dose Naltrexone and Multiple Sclerosis
Hi, I posted 2 questions about the mechanism of LDN at
http://forums.about.com/n/pfx/forum.aspx?nav=messages&webtag=ab-ms&tid=408
These are also relevant in the case of Fibromyalgia. Does anybody have any knowledge about the mechanism of LDN, and could answer these questions?
I have PRMS and had the progression of the disease as well as it’s symptoms completly relieved a year ago.
I have written a book about my experience entitled “Google LDN !” now available at Amazon and Barnes & Noble. Includes 100 page appendix with the most JP to date Info onon the effects of LDN on immune system related disorders.
Dear Joseph,
thanks for the suggestion. It would help if you could provide brief answers to the following two questions about LDN. Many people shy away from reading 100 pages in a book, and it would help them a lot to have a short explanation of the mechanism, so they know what they’re doing to their bodies&minds:
It seems that two separate mechanisms have been suggested for LDN in MS. Increase of circulating beta-endorphins and reduction of neurotoxic glutamate accumulation.
My question about the first mechanism is: doesn’t LDN raise endorphin levels by blocking receptors? But I thought receipt of beta-endorphins by those receptors is what leads to anti-inflammatory processes. If the body raises the amount of beta-endorphins by the same amount they were blocked by the LDN, wouldn’t this yield the same number of receipts of beta-endorphins in a patient who takes LDN as in one who doesn’t? To be more concrete, wouldn’t LDN lead to increased MS symptoms at night (while the receptors are blocked), but decreased symptoms during the day (when the receptors are free again but there is more circulating beta-endorphin)?
My question about the second mechanism is: is there any evidence that LDN indeed does reduce the production of inducible nitric oxide synthase (which would naturally lead to reduction of glutamate accumulation)? Or is it just speculation?
Thanks,
Richard
LDN-started a few weeks ago on a progressive dose. Already I am feeling more energy and less pain. I pray as the months go on and the dose increases I will continue to have the same results.
Glutamate excess and its reduction by low dose naltrexone (LDN) are the main facets of the hypothesis proposed by the Cornell pathologist Yash Agrawal in explaining the benefits of LDN described in MS (anecdotally and in clinical trials). In his research, Dr. John Hong a senior scientists at the National Institutes of Health, has shown how glutamate contributes to the disease process in Parkinson’s Disease. In his preliminary studies of low dose opiate antagonists such as naltrexone, Dr. Hong has also shown how these compounds reduce glutamate accumulations and stop disease progression in neurological disorders.
Read more: “Glutamate Excess in Multiple Sclerosis Variants: Why Low Dose Naltrexone Offers Benefits | Suite101.com” – http://autoimmunedisease.suite101.com/article.cfm/glutamate_excess_in_multiple_sclerosis_variants#ixzz0G66boIRt&A
I wasn’t aware the fibromyalgia had definitely been classified as an autoimmune disorder. Do you have research to back this? Thanks.
I’m an M.S. patient and LDN has been a huge help to me, so I’m pleased whenever I see an article that spreads the word. Patients with auto-immune (or immune-deficient) disorders should be told about this treatment! But since no pharmaceutical company has a vested interest in promoting this cheap, generic substance , no one tell doctors and doctors don’t tell patients. Most of us who use it have had to educate our own physicians first before we could get it prescribed for us. I still wish I’d heard about and tried LDN FIRST, instead of wasting tens of thousands of dollars on the conventional therapies that don’t really help.
I heard about this for the first time last month – when I asked my doctor about it she told me it was an urban legend – an internet scam. Any suggestions on how I can become more informed?
“reaofsunshine”, I know you weren’t asking ME, but until someone else answers…
Most if not all of us who are taking LDN had to jump through some hoops to get it prescribed. My family doctor knew all about naltrexone itself of course, but hadn’t heard of the low dose uses. But she was OPEN to it, and she read the information I brought to her about it, thought it sounded harmless and very promising. She called my (now FORMER) neurologist to ask if there was any danger in taking it and he said there wasn’t, he just didn’t believe it was enough by itself and considered it an “interesting complimentary therapy”. (He had ALL of his patients on conventional therapies at the time, which was 2005.)
I don’t want to darken your sunny spirits:), but the first thing you need to do is seriously consider getting A NEW DOCTOR! Yours isn’t just UNINFORMED; she’s a flat-out LIAR, obviously a terrible characteristic for any doctor. Doctors (and ALL scientists) need not only knowledge but an open mind and a belief in accurate thinking- NOT a knee-jerk resistance to anything they don’t already know about. An “internet scam”?!Seriously, your doctor is a LIAR, a BS artist who assumes you won’t question anything she says.
For a doctor who might prescribe LDN for you, check the following website for a list of MD’s who already prescribe it: http://www.ldners.org/resources.htm. Or you can “Google” “LDN Doctors”.
Be patient as you go through the list, and good luck!
First I want to say to Gary, things are changing as new research emerges about this disease. So little was known about fibromyalgia for so long.
I’m in a phase II clinical trial of LDN for fibro at Stanford. The trial investigator, Dr. Jarred Younger, told me they are now thinking fibro has an autoimmune component. Other researcher are beginning to refer to fibro as a neuro-immune disorder.
I’m on day 26 of the double-blind cross-over trial, and frankly I’m quite certain they started me on LDN because my fibro pain has dropped from an average of 7 to an average of 2. Day before yesterday is was 0! I’m not kidding, it’s a miracle. All other symptoms have followed the pain curve. I want to shout to the world, “Please, if you have an auto-immune or neuro-immune disease, TRY LDN!!! You have nothing to lose but your pain and poor health. I have!!!
“reaofsunshine” Flora68 is right about your doctor. I don’t mean to be rude, but I don’t like doctors who are keeping their patients from getting well. There is no excuse, whether it be ignorance or physician kick-backs from the pharmaceutical companies to keep their patients on less effective but more expensive drugs. No one, and I mean NO ONE, is making any money off of low dose naltrexone. It’s an orphaned, generic drug that big pharmaceutical companies can’t make any money off of because their patent ran out years ago. That’s why they aren’t sponsoring clinical trials. The clinical trial I’m in is sponsored by private donors who’ve been helped by LDN and they know it works. So I appeal to your common sense, ask your doctor this: Why would Stanford University, clearly one of the most prestigious univesities in the world, be doing a phase II clinical trial on a a drug that is nothing more than an internet scam? And keep in mind that the phase I study was hugely successful. If you go to the stanford website you can read about that study. Yep, you need a new doctor alright. By the way, there are over 6,000 thankful and happy LDN users in just one of the LDN yahoo support groups, and there are several different LDN groups. I wish you good health and a pain-free tomorrow (and a better doctor who will take care of you).
In your blog above, you comment that fibromyalgia is an autoimmune disorder. Actually, it is not. If it were, we fibro patients would likely have better medications–ones that could counteract immunne dysfunction such as in Lupus and RA.