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Adrienne Dellwo

Treating Pain Via Immune Pathways: Naltrexone & Fibromyalgia

By March 9, 2012

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It's really fascinating to watch different pieces of the fibromyalgia puzzle come together in a way that starts to make sense.

New information is available about extremely low doses of the drug naltrexone, which Stanford researchers have for the past several years been investigating as a fibromyalgia treatment. When it comes to lessening fibromyalgia pain, the drug has shown real promise in early trials, so researchers are moving forward and say they're continuing to see positive results. However, the pain-relieving effect now appears to be coming from an unexpected place, according to preliminary data presented recently at a medical conference.

Naltrexone has an effect on the brain's opioid pathways, named for the impact of opioid (narcotic) painkillers, so it seemed logical that this effect was responsible for effect on pain. However, it's now looking like that mechanism of action isn't related to how this drug helps us. Instead, scientists say, it appears to be working through the brain's own immune system instead of pain or painkilling pathways.

The Brain's Immune System

Because of the blood-brain barrier (BBB), the brain is well insulated from many of the things you find circulating around the rest of the body. Most viruses and bacteria can't get in. Most toxins can't get in. Many nutrients can't even get in, or do so in miniscule amounts. Many drugs that work on the brain need a special ingredient to help them get past the BBB.

This keeps the brain in a safe, tightly control environment. That's good. However, it also isolates the brain from the body's immune system.

Because of that, the brain needs to take care of its own immunity. The job falls to specialized cells called glia. Glial cells are the white matter of the brain and are fundamentally different from gray-matter neurons, which is what usually comes to mind when we think of brain cells.

When the brain is under attack, certain types of glial cells called microglia can cause the release of inflammatory cytokines. (Those who follow chronic fatigue syndrome research are highly familiar with those things!)

Cytokines are an important part of both the brain's and the body's immune system. They lead to inflammation, which is protective in the right circumstances. However, if cytokine levels become too high, which may happen in fibromyalgia (and chronic fatigue syndrome) inflammation can become chronic. According to a different presentation at the same medical conference, cytokines may also make neurons less receptive to pain killers.

The Stanford researchers believe that drugs such as naltrexone relieve fibromyalgia pain by changing the way microglia behave. Hypothetically, this could reduce unhealthy inflammation and also make pain killers work better for us.

Want to know more about glia? See my review of The Other Brain, by R. Douglas Fields, PhD.

Inflammation in Fibromyalgia

For a long time, doctors assumed that fibromyalgia was an inflammatory condition. After all, most painful conditions are. Then it became clear that those of us with fibromyalgia generally don't test positive for high inflammatory markers, so the thinking changed. Meanwhile, millions of us (and our doctors) wondered why we consistently had test results showing slightly high markers that medical science said were too low to worry about.

In the past year, some emerging research has brought back the theory of inflammation in us. Ginevra Liptan, MD, from Oregon Health Sciences University, has demonstrated that we may have chronic inflammation of the fascia - a thin layer of connective tissue that surrounds muscles, organs and other internal structures in a complex network stretching throughout your entire body. This could explain why our pain can be anywhere and everywhere, and why we seem to have persistent low-grade inflammation.

See my review of Dr. Liptan's book, Figuring Out Fibromyalgia.

What Does This Mean for Us?

Studies of low-dose naltrexone (LDN) for fibromyalgia are in the early stages, which means it's too soon for most doctors to be comfortable prescribing it. However, it's been on the market for a long time and is relatively cheap.

The latest preliminary data from Stanford suggest that LDN makes a significant difference in almost half of us (48.5%), and made a smaller difference in another quarter. Participants reported that it was almost as tolerable as a placebo - and for a group of folks who have trouble tolerating anything, that's a big deal! The most common side effects were headache and vivid dreams.

It's worth noting that LDN doesn't appear to help with our fatigue or sleep quality. Pain has been the primary focus of the studies thus far, so we don't know what, if any, impact it may have on our other myriad symptoms. Still, when you're constantly wracked with intense pain, pain relief is probably your primary focus, too! There's also the general tendency for lowering pain levels to help our nervous systems quiet down, thus indirectly helping alleviate other symptoms.

For researchers, this points to a new direction for pain research. Medpage Today quotes Linda Watkins, PhD, of the University of Colorado as saying,"Immunologists have ignored pain, and pain people have ignored immunology. That has to end. They are intertwined."

Have you taken LDN? How did it work for you? Have you requested it and been told no? Leave your comments below!

Learn more or join the conversation!

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Comments
March 9, 2012 at 9:36 am
(1) Rachael says:

If doctors are waiting for the studies that prove naltrexone is effective for FM patients, they might be waiting for a long time. Naltrexone is already generic, so thereís no financial incentive for any pharmaceutical company to go through the multi-million dollar process to get FDA approval. The FDA has a lot of criteria you have to go through and thereís no incentive to do it because nobody can make any “MONEY” from it, so itís likely it will never be widely used for fibromyalgia. Isn’t that just wonderful news? No money; no incentive. So, it’s up to you to ask your doctor to prescribe naltrexone to you because he will probably never do it on his own.

http://americannewsreport.com/promising-drug-to-treat-fibromyalgia-may-never-be-approved-by-fda-8813299.html

March 9, 2012 at 11:02 am
(2) Pamela Gaines says:

Mu GI dr has talked to me about going on this medication for Crohn’s disease. It has shown promising results. You have to go to a special pharmacy to have this made to order because low-dose is not available in regular pharmacies. The other side effect I have reaad up on about this drug is that you cannot use pain mediaction while taking it because the nature of the drug wsa made for drug users to give up drugs.

All in all an interesting medication. Anyone interested in this can go to Google and research it. Take the information to your dr and see if he will prescribe it. Because there will be no research into it because there is no money to be made off of it. Sadly, alot of the older drugs are finding new uses however, big brother pharm companies don’t want the world to know about them.

March 9, 2012 at 11:56 am
(3) Kelly Kendall says:

I have had FMS/ME/CFS for 12 years. I have been on LDN for about 6 months now. I have had good results with it. My Doc prescribed it after I presented her with the study done at Stanford, the first one. I have it prepared by a local compounding pharmacy. I started at 1.5MG and slowly ramped up over a month to 4.5MG, where I have remained.

If you are considering it, go to http://www.lowdosenaltrexone.org. They have a ton of helpful information, lists of good compounding pharmacies, and more.

Kelly

March 9, 2012 at 12:10 pm
(4) Tracy says:

I have studied Fibro and Chronic Pain (as well as CFS) for years. I have all 3. I am a nurse. About 15 years ago a “new” field was being introduced: psych-neuro-immunology. When I first learned of this, it made perfect sense to me. The 3 are directly related to each other. If one is out of balance (meaning neurotransmitters in the brain), all will be out of balance. Wish researchers had been willing to pay attention to this years ago. I wrote many papers on it in relation to Fibro and Substance P. Maybe research is finally catching up with what we all have known at some level all along!

March 9, 2012 at 12:51 pm
(5) Marie says:

I’ve been on LDN for fibro for 8 months. It knocks down the pain and increases energy considerably.

March 9, 2012 at 3:54 pm
(6) Patrick says:

I have been on LDN for at least 5 years.
It eliminated almost completely Brain Fog and it has increased my energy levels.
Muscle pain has decreased but is still substantial.
In order to confirm the effectiveness of LDN, I stopped taking it for a period and within a short time my condition deteriorated substantially.
Once I started taking LDN again my condition improved.
LDN is not a cure but I would recommend it to anyone who suffers from CFS/ME.

March 9, 2012 at 4:01 pm
(7) Maria says:

I’ve had CFS/FM for 4 years. After a year of nagging my Doctor and providing research documentation he finally relented and prescribed LDN to me this past summer. Started at 3mg then went to 4.5mg. It has made a tremendous difference in my activity level, pain level, stiffness, sleep, mental clarity, and recovery time after over-exertion. My quality of life is much improved and I love it! What others have said is true, LDN is not expensive and not a name brand therefore there is no incentive for Doctors to prescribe it. We have to be our own advocates and as long as you’re willing to try it…..why not? Side effects were minimal and exactly as stated, sleep disturbances for the the first 2-3 weeks of use. Yes, you cannot be on pain meds when you start taking this so that is a drawback for anyone who relies heavily on their pain meds as it does take some time for the benefits of LDN to kick in. Good luck to you all!

March 9, 2012 at 4:55 pm
(8) Pat says:

I take LDN. My GP would not prescribe it, but I found a Holistic Doctor that would. I get it at a compound pharmacy. I had vivid dreams when I tried to take it at night, so I switched to a.m. and then no vivid dreams. You start at 1.5mg. for a week, then 2.0 for a week, etc. until you get to the dose that is right for you. Usually 4.5 mg. I take 3.0 because I only weigh 108 lbs. It took away the stabbing pain beneath my shoulder blade and in my hip which I had 24/7. It has not helped my fatigue yet. I might try a stronger dose. I have been taking it for 1 year now.

March 9, 2012 at 5:38 pm
(9) Roberta says:

Regarding not being able to take pain meds would that include Celebrex? Or are you talking about Tylenol, aspirin preps, etc?

March 9, 2012 at 6:05 pm
(10) helen says:

I take Tramadol for pain at night and I take my LDN at lunchtime. This gives me a good break in between which is required. I believe that it’s only opiates which interfere with LDN as they counteract on another. Tramadol is a weak opiate. Lots of information on the website quoted above and on several Facebook sites such as ‘LDN for Fibromyalgia’

I’m pretty sure you can still take OTC and some other prescription painkillers but check with the Facebook groups, they are very knowledgeable. Also lots of informative videos on Youtube such as from Skips Pharmacy and several conferences. Good luck friends.

March 9, 2012 at 6:32 pm
(11) Ali says:

LDN has had a profound effect on my sleep and fatigue and I am very surprised that this hasn’t been reported! I started a group on Facebook and people there have had similar experiences.

I no longer suffer with daily fatigue where I am reduced to sleeping two hours a day. At the worst I sleep maybe once or twice in a month. I may still have to lie or sit down, but not sleep.

LDN has kept me upright for longer than I could ever manage before. I can stay upright for a whole day now!

It has also improved my immunity, helped initially with Pain and still does to some extent although I have developed pain in different areas but I don’t feel that is connected to LDN.

I hope the trials are picked up. This cheap drug has literally given me some life back!

March 9, 2012 at 7:38 pm
(12) Bev says:

The only painkillers to avoid are the opiate based ones. Such as vicodin. Ordinary aspirin, Tylenol etc are OK to take. There are hundreds of thousands of people all over the world that take LDN. Many for Fibro, MS, Crohns, cancers and theres plenty of infomation online
My husband has taken LDN for his MS for 7 years and remains stable and well. People with Fibro need to take a look at their diets as many of us benefit from not eating gluten or dairy.
Plenty of people do get a lot of relief from fatigue and pain as well as almost never catching common cold/coughs – whatever is going around. LDN will give people a healthy functioning immune system which is the opposite of what mainsteam medicine does with immune suppresents.

March 9, 2012 at 9:38 pm
(13) Marti Murphy says:

Two years ago, I started reading about LDN online. I decided that, with no side effects, it was worth trying. Without a medical professional to help me, I ordered it from Canada, prepared it with distilled water and dosed myself. I have been taking 4.5 mg. for 11/2 years, now, and the benefits continue. Fog, pain, imbalance, memory issues, sleep issues have all reduced. It has not seemed helpful for chronic fatigue.

I now have a Rheumy who says I should keep doing what I’m doing. It costs about $40 every nine months, which I just pay out of pocket. I am very happy with this drug and will continue it. I take it at bedtime, and take no opiates at all. Celebrex and Cymbalta are pretty much the Rx’s besides Soma and Xanax, all at low dosages.

I can honestly recommend it to anyone. I’ll never be done with this Fibro “thing”, but it is bearable, now.

March 10, 2012 at 11:33 am
(14) Susie says:

Can you give more info about how to order online please?

March 10, 2012 at 12:37 pm
(15) Julia Hugo Rachel says:

You mention that “Stanford” has been doing studies on LDN. Would you please be so kind as to list which department at Stanford and furthermore which Doctors at Stanford are conducting these studies?
One reader wrote in that she has a copy of the Stanford Paper on LDN, it would be great to reference that paper in this article as well. That way, more of us could “spread the word”.

Best Regards,
Julia Hugo Rachel

March 10, 2012 at 2:12 pm
(16) georgia says:

I started LDN last December & noticed an over-all improved feeling within just a couple of weeks. However, after about six weeks I developed an almost body-wide rash & attributed this to the LDN as this was the only change in my life. I’ve now been off the drug for several weeks & I still have the rash. I take no other drugs but do eat a healthy diet & supplement it with plenty of vitamins, minerals, etc.

Since stopping the LDN, my intestinal system has been out of whack. I can’t tolerate any fats whatsoever.

Any comments will be most appreciated.

Thank you,
georgia

March 10, 2012 at 3:17 pm
(17) Alpha says:

After reading these comments, I’m VERY EXCITED!! I’m going to ask my doctor for a prescription, taking along a printout of these comments and of the website given in one of them!

March 10, 2012 at 8:41 pm
(18) mindy says:

Here is the link to the Stanford pilot study abstract. You can click on the link at bottom right of page for the full article.

http://onlinelibrary.wiley.com/doi/10.1111/j.1526-4637.2009.00613.x/abstract

March 11, 2012 at 6:00 pm
(19) Lyn Griffith says:

My naturopath prescribedLDN to me. I took it for about a month. The only thing that I ed is that it made my pain medicine not as effective. I take tramadol. LDN didn’t work fo me.

March 13, 2012 at 1:32 pm
(20) Ginny Marshall says:

I printed out the LDN info from their website for my February 20th appointment with the rheumatologist; he glanced at the info, said he never heard of this drug and would not prescribe it for me. I expected this reaction, so was not terribly disappointed; where is the harm in allowing a patient to try something that might improve their fibro symptoms? Oh, yes, BIG PHARMA will not benefit from this. Looking for a new physician now.

March 16, 2012 at 3:48 pm
(21) Marti Murphy says:

I order my LDN from the River Pharmacy in Canada. It is an international pharmacy, and the drug package comes from India. You can talk with the folks at the River Pharm. — they’re very helpful with instructions for preparation and dosing. I ordered my mortar and pestle from Amazon as well as a dozen brown dropper bottles and a graduated 50 ml. cylindar. Very inexpensive.

The LDN comes to me in 50 mg. tablets which convert to 50 ml. liquid mixed in distilled water (very cheap). Please continue to ask questions — LDN is a great help with Fibro!! Can’t recomment it highly enough.

Marti

March 18, 2012 at 1:17 am
(22) Marijke G says:

I was diagnosed with Fibromyalgia nearly 5 years ago and have been on and off LDN for the last 3 years. I needed to stay off the LDN after breaking my ankle and getting a 30cm bloodclot which required the taking of Warfarin (rat poison!!). Within 3 days of taking LDN for the first time I saw marked improvements in pain levels, energy, and concentration power. Within a week after stopping I began to deteriorate until a year later I begged my doctor to be allowed back on LDN again. No, it is not a cure, by no means, but it certainly takes the edge off all the problems that fibromyalgia present us with: pain, fibrofog, low energy etc. A word of caution: if you need to undergo surgery requiring general anesthetic, make sure you tell the anesthetist that you are taking LDN! They need to remove the traces from your body before they can give you an anesthetic.

March 21, 2012 at 8:56 pm
(23) Milton says:

Have been on LDN for about a year now and it definitely helps me sleep better. Take it just before I go to bed but the effects are not as consistent as I would have thought. Sometimes if I don’t take it for a week I sleep better than ever as well. If I have trouble waking in middle of night I add some Melatonin drops (from compounding chemist) to help and that works well, but too much makes me groggy next morning. Less than 1mg is enough for me. I don’t mind the vivid dreams as I take that as a sign that I’m sleeping normally. For many years I didn’t seem to dream at all and my partner called me “the thrashing machine” as I tossed and turned during the night. Was originally advised by doctor that LDN wouldn’t help me but got another to prescribe. Pharmacy in Miranda Mall has best price in Sydney-$90 for 100 x 4.5mg

April 26, 2012 at 3:06 am
(24) Lily of Oakland Ca says:

I am so excited about this information! I was diagnosed with fybromyalgia in 2003. I have probably tried just about every kind of pain med., but never LDN I am going to mention it to my pain management doc. and see what kind of reaction I get. Hopefully it will b a positive one. ya’ll have brought new hope in my life! Thanks

June 19, 2012 at 2:49 am
(25) Nina says:

I started LDN Oct 2012 after presenting my open minded rheumatologist with the Stanford pilot study. To say that LDN has given me my life and my brain back is an understatement. I can’t stop recommending to people. I’m back at uni getting high distinctions after pulling out a few years ago because I just couldn’t process the material. I never think twice before making social comitments. I had 17 peopple for Christmas lunch at my house and had a ball.

July 2, 2012 at 5:09 am
(26) Hazel B says:

I am currently going through tramadol withdrawal with the intention of starting LDN once I have done so. My doctor was unwilling to prescibe it as an NHS prescription; but was willing to write me a private prescription for the next 3 months, to allow me to trial it. I’m just waiting on my prescription arriving from chemist (due middle of this week) and once i get off the tramadol, i can get started on it.

I have heard via friends and read online a lot of good results with LDN, and while the £30 a month prescription is a lot when you are struggling on benefits; if it works it will be worth it (and I’ve been looking at it as only being £1.00 a day

very interesting article xx

July 2, 2012 at 9:18 am
(27) Corinne says:

I’m disturbed at how many people mentioned taking Tramadol at the same time as LDN. LDN is an opiate BLOCKER, which would render any opiate based medication (weak or otherwise) ineffective & therefore pointless.
LDN is a synthetic opioid which works on the same receptors that other opiates do, so it stands to reason that they would no longer work- in fact I believe it can make you feel rather ill!
ALL opiate based medications should be avoided while using LDN.

I haven’t managed to find a way of getting LDN yet, but I do have high hopes for it & hope to try it soon. First I need to wean off my opiate based meds.

July 27, 2012 at 7:22 pm
(28) S says:

I developed RA when I was in my 20s and although it was ver difficult at times, I eventually went on Enbrel which significantly reduced all RA symptoms, including inflammation. I was at an all-time high point in my life and with my health (despite still having RA) when I developed fibromyalgia. I was still on Enbrel at that time. Enbrel works on cytokines. If cytokines play a role in my fibromyalgia diagnosis, it’s somehow unrelated to my RA inflammation/cytokines/etc.
Similarly, fibromyalgia often occurs comorbid in Crohn’s patients who take some of the same cytokine-affecting meds that RA patients take. If one’s RA or Crohn’s is under control with a cytokine-affecting medication, then cytokines might not play a significant role in fibro.

December 20, 2012 at 3:10 pm
(29) iriseyes says:

I start Naltrexone on Saturday after being on Narcotics for 2 years. I was on 10/325 hydocodones with little improvement. To be honest I am scared to death of this drug and am cautious about taking it. They are prescribing me 50 mg as I have tried everything else with no relief.

Did taking the Naltrexone make any of you sick? Also my pharmacist told me since I am having problems with insomnia that I need to take this medication in the morning as it will amp me up. Did it do this to any of you?

Again, I am scared of this medication but hope it does some good.

BB
iriseyes

December 21, 2012 at 10:34 pm
(30) diane says:

i have been taking LDN for two weeks now – started at 1.2 mg for 1st week and up to 2.4 second week – the first day I took it I felt immediate relief, no pain, morning stiffness, no fibro fog, and lots of energy. I have CFS/FM and tried everything to no avail. This drug has worked wonders for me… only side effects are vivid dreams and some problems falling asleep so I take xanax or advil pm to make me fall asleep. I;m hoping these side efffects will go away as others have reported. I suggest anyone with FM, CFS to try this drug – it is not toxic and not expensive.

December 31, 2012 at 6:54 pm
(31) Kelly says:
January 22, 2013 at 2:01 am
(32) Vielka L. Uribe says:

I have had fibromyalgia for 25 years, have scoliosis and have had problems with 2 discs on my back that caused me to suffer from frozen shoulders and sciatica problems for 3 years. I was probably on every pain medication possible and taking steroids shots 3-4 times a year; seen acupunturist and chiropractor. I was depressed and on antidepressants too, my life as I knew it was over. So you can understand my frustration you need to know that I am a veterinarian and my husband a physician, I want it to die. 1 1/2 years ago still in pain and not being able to do anything at all, decided to stop taking meds and fired my pain management doctor, nothing prepared me to for the hell that followed for 6 months from the withdrawals symptoms. On the 7th mo. during a routine cholesterol check up my FP doctor referred me to a Rheumathologist which said that he was doing his own research on LDN and being clean I was perfect to start. So I started at 4.5mg and exactly a year later this month I can tell you that I feel 90% better from the Fibromialgia and 75% better from my other back pain issues, which are under control with weekly chiroprator care and a compound cream of Flubiprofen/Cyclobenzaprine/Gabapentin/Lidocaine/Prilocaine. Most of this I used to take orally.
I am still reluctant to go full throttle with my life, but life is not waiting for me. Last Xmas my Dad died and in the past just the stress would have killed me; I was able to deal with that thru the holiday’s without a relapse.
And as a bonus have lost 20lbs, just for dropping the meds ( lyrica and cymbalta and the steroids) during that year and a half.
The only side effect had been the vivid dreams but I LOVE my dreams so that is not a problem. LDN is not covered by my insurance but it is not expensive.
That medicine had been a Godsend for me I am even thinking on volunteering at my local animal shelter.

March 15, 2013 at 9:00 pm
(33) Ken Latchers says:

I have been taking LDN for a while. I cannot say that I agree with all the hoopla above. I thought it would be a miracle also. When I have gone off it (experiment to see if I see a difference), I do not see much improvement one way or the other.

After researching and trying a number of things, I had previously found that low dose nortriptyline (an older, inexpensive antidepressant) is by far what I notice when I tried using it vs. not using it. It has been borne out as more effective than either Lyrica or Cymbalta, etc. (do a little research)

June 19, 2013 at 7:16 am
(34) Peggy Robison says:

I have had fibromyalgia and chronic fatigue for years and have tried many medications. Nothing helped. I developed tick fever which my doctor treated for four years but could never completely get rid of the Titer count, so he finally sent me to a disease control center, which was a miracle. The doctor there was working with LDN on his patients with fibromyalgia. He told me it only works on one out of five and it might not work for me. I said I will try anything. Thank the LORD, it worked for me. It has been life changing. I still have pain from degenerative arthritis but a lot of my pain is gone. It also helps with fatigue. I am able to stay up more and it increased my stamina. As stated above, many doctors won’t prescribe it. Insurance won’t pay since it is a compound ,and pharmacies who are not compound labs will not make it.. But it is cheap and well worth it. It also reduced my cravings for sweets, so that I lost some weight. It has been a miracle for me.

July 31, 2013 at 3:51 pm
(35) val says:

Why do the comments stop in 2012? I would like to talk to Marti Murphy, who commented on here about the River Pharmacy in Canada. I have talked to them. I am, altho, going to a new dr. that has his own compounding pharmacy and he did give my daughter LDN. I am pretty sure he will give me some, but she says ins. doesn’t cover it. Hers for about 3 weeks was around $44. I don’t want to pay that much, but my Lyrica is up to $70 a month now, so I am hoping I can go off of that. I did try my daughter’s LDN for about a week and it did help, but I felt a little out of it, so I am waiting to see him.
Shout out to Marti Murphy or anyone who has gone thru River Pharmacy in Canada. I also see where someone got theirs from Sydney, I am guessing Australia???? Thanks folks for all the info. It’s a GREAT HELP. THANKS!!!!!!!!!!!!!!!!!!

February 25, 2014 at 3:10 pm
(36) Kay Deely says:

To Val: I am in the process of getting hydrocondone out of my system so I can go on LDN. There is a compounding pharmacy in Lakeside, CO that I can a 3 month supply for $43 . If you see this and are interested, I will post it.

April 6, 2014 at 2:41 am
(37) ginny says:

Iriseyes, low dose naltrexone is 4.5mg or less. 50mg it’s full strength and won’t do a thing fur pain. Have your Dr call Dr Younger at Stanford or search fur his recent publication in Rheumatology.

Tramadol is a symthetic opioid and does not use the same receptors as narcotics and LDN. There is much misinformation on LDN and tramadol. They can be tolerated together by most. Tramadol affects serotonin receptors this can interfere with sleep. Call Skips Pharmacy in Boca Ratan for expert guidance.

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