Stanford Fibromyalgia Study on LDN Replicated at CureTogether
Naltrexone, a drug used to treat opioid addiction, is being used off-label to treat pain in Fibromyalgia and other chronic conditions. There are few studies on this, because naltrexone is a generic drug, so no pharma company can make money from it.
A small Stanford study on Low-Dose Naltrexone (LDN) found that 6 out of 10 fibromyalgia patients experienced significant reduction in their symptoms on LDN compared to placebo.
This finding is confirmed at CureTogether, where 26 out of 44 fibromyalgia patients report a major improvement in their symptoms after taking LDN. In fact, LDN is ranked as the #1 most effective treatment for fibromyalgia at CureTogether (see the screenshot below.)
Larger studies still need to be done, but it is remarkable that the CureTogether ratio of improvement on LDN is 59% (26/44), and the Stanford ratio of improvement on LDN is 60% (6/10). The same result!
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October 13th, 2011 at 3:51 am
The Stanford researchers finished a larger study of LDN for fibromyalgia about 1.5 years ago and the results were just as promising as in the first one, but unfortunately they are still waiting publication.
October 13th, 2011 at 7:39 am
While I appreciate that LDN is receiving some recognition for the benefits some have experienced with it, I observe that lifestyle modifiers such as increasing rest, reducing stress, hot relaxing baths have as much benefit as the drug. Considering the adverse effects of pharmaceutical agents, which do become evident in the long term with new symptoms and conditions, I cannot support LDN as a priority treatment. As a provider, I only recommend using the drug for unusual circumstances where the patient is incapable of controlling their environment for some reason. Please understand that I am not being insensitive…I have lived with fibromyalgia over 20 years.
October 13th, 2011 at 9:16 am
Have you tried LDN for any other diseases? I have ankylosing Spondylitis and sometimes I spend way too many hours everyday dealing with pain and stiffness related to my condition. Including ice, heat, stretching, resting, so much so I have lost the life I used to have.
I would appreciate your thoughts. I am currently on Cymbalta 30 mg, Leflunomide 10 mg, OTC Motrin 400 mg 3 or 4x daily, and Vicodin as needed which is every night at bedtime at the least.
Thanks Darcy Stephens
October 13th, 2011 at 9:36 am
I’ve had Fibromyalgia since 1986. It has destroyed my life. I fully understand Kevorkian’s 40th “patient ” who had it -she was a 42 year old nurse I believe. She opted for assisted suicide. I went from a lovely little house in Washington , a husband, marriage of 12 years, 9 year old son and 3 year old daughter, a 120 lb. body and active life,to Hell. It wasn’t my first chronic illness so maybe I was worn down. After months of no sleep,I took amitriptyline. I slept . Yes. I also gained 3 pounds a week. By the time I was a size 14-(no longer 7) the only thing that had changed was my weight gain and my sleep. My pain was the same during the day. I would have preferred to keep my old body,my self-esteem,and some hope. The “doctors” -small d- knew little more than what their high-heeled drug pushers with the wheelie carts told them. Kick-backs much?
I never got any relief from anything,ever again. I refused to be a guinea pig. My fellow sufferers told me ALL of them caused HUGE weight gain. I finally,after trying various antidepressants. Prozac. That’s what I take. And Cymbalta. Do I feel better? Not much. I also have Sciatica and scoliosis and DDD-Degenerative disc disorder. I can stand up for -about 5 minutes. I have the will to cook and clean. But to my family-long gone now-I am a fat old woman-a lump of ugly,lazy,old fat. So you just tell me about soaking in a nice relaxing bath (and remember Fibro comes with chronic fatigue). I can’t seem to get the energy. ” incapable of controlling their environment?” I can’t control the damn water tap.
October 13th, 2011 at 12:24 pm
I agree 100%………………. You are a Nurse. I am a Pharmacist. We should know.
October 13th, 2011 at 10:53 pm
Helga I can understand how bad you must feel. Look at the suggested treatments at the effectiveness of Low Dose Naltrexone. LDN acts to modulate the immune system by blocking the opiod receptors and causing the body to produce extra endorphins (the feel-good chemicals). Not only dies LDN reduce pain caused by inflammation, you feel so much better with extra endorphins. It is cheap and has very few bad side effects.
I know because I started to take LDN I felt like a miserable fatigued blob with sore bit everywhere. I fell so much better now.
October 13th, 2011 at 11:36 pm
Gerry, with whom do you agree, & what is it you should know?
I was a nurse for 45 years & have had fibromyalgia for over 30 years, asthma for about seven, sinusitis for most of my life, dermatitis &, before I went on LDN, psoriatic arthritis.
So here is what I know: When I started taking LDN over three years ago, the fibro-fog lifted in a week, & soon thereafter most of the fibro pain was gone, along with the dermatitis. I’ve not had to take any asthma meds, have not had a sinus infection, and the psoriatic arthritis is much diminished. I still have psoriasis, but it is managable, and osteo arthritis, but didn’t expect it to help with that, because it isn’t auto-immune.
No amount of hot showers, rest & stress reduction ever did for me what LDN has done. I’m still sick, but I’m better, and grateful for LDN. As for long-term effects, it is given in very low doses & is one of the safest drugs on th market. Safe, cheap & effective. People have been on it for over 20 years with no ill effects. So, don’t knock it until you’ve tried it, and please don’t minimize & discount the success stories that others have to tell. It can give you your life back.
October 14th, 2011 at 5:26 am
Does anyone have experience or knowledge of LDN helping with Reynaud’s or Lupus? I’ve had Reynaud’s since I was 14 and nothing helps but gloves. Gloves are fine, but it can be hard to take tests at school with blue hands and no feeling. I asked about Lupus because my aunt has it (along with Reynaud’s).
October 14th, 2011 at 7:34 am
I am going to echo Gerry. I will say definitively that no one should denigrate LDN if one has not tried it.
I’ve been on it for over a year. No doctor knew anything about it, nor wanted to know about it. So I read extensively, spoke with a compounding pharmacist friend, and ordered it from Canada. The reports are right: it is very cheap, easy to compound by myself, has no side effects, no drug interactions except one cannot take any opioid with it. Cymbalta etc. are fine with LDN.
It IS FDA approved — for many years — for opioid dependency in 50 mg doses. I take about 4.5 mg at bedtime. The results reported by Cure Together echo mine. Nothing but unconsciousness will end the pain, cramps etc, completely. But I’ll settle for half gone! So cheap and easy!!
Marti
October 20th, 2011 at 12:29 am
Rich:
I started LDN just a little over two weeks ago. I too have Reynaud’s, also RA, sinusitis, fibro. I have seen an amazing improvement in my pain levels- pretty much gone, brain fog gone, dry eyes gone, and sinuses greatly improved ( wasn’t expecting that), and oddly, a good improvement int circulation-wasn’t expecting that either. Temp here has been between 40-60- usually enough to have me permanently white for a long time. It seems like I am maybe just a little less susceptible to flares, and recover more quickly when I do get cold.
I am telling you- I am starting to feel like a normal person (not sure I have ever really been normal, so this ish new definition of “better than normal”.
I was really getting discouraged with the amount of specialists, heavy duty drug regimens, lots of studies, exhaustive research, all while being completely exhausted and foggy- not to mention the pain. I am an optimist and a fighter, but this stuff seeps into your psyche and body and latches hold. LDN is the clearest positive reaction to any singular or combined set of treatments tried to date (we spared no expense trying everything). side effects are minimal- sleep disturbance first few nights. Vivid dreams are still continuing, but they are more interesting than movies I have seen lately, so don’t mind that a bit.
I am so excited about this that I am starting my 15yr old daughter on it for similar issues. Promising early results there.
So- to anyone living with a shell of a life-
LDN can lend benefit to so many symptoms, and give you a life back. Do you really need the medical establishment to agree with you on this before pursuing ?
October 20th, 2011 at 10:29 am
Definitely think LDN works for fibro pain and fatigue. Suffered for 5 years and was getting close to what I thought was disabled. Two days after taking it I felt better than I had in years. The only thing I am curious about is it seems to be wearing off some, or maybe that’s just the wax and wane of fibro and I have also gained 25 lbs in 3 months…which isn’t making me too happy. ANyone have experiment with these things?
Thanks!
November 2nd, 2011 at 3:28 pm
I am not familiar with LDN but will become familiar. I am very familiar with Fibromyalgia for over 15 years…. Yes, like some of you I lost my life to it. I was a large (60 mg 2x daily) dosage for depression and along the way found almost complete relief from Fibromyalgia.
On a lower dosage I found myself in FM pain again. As much as I do not want to be dependent on medication, I do want to live a life without agony… I will continue this medication in order to stay an active optimist and live to fight other battles that I live with.
January 2nd, 2012 at 10:00 pm
I HAVE HEARD A GREAT DEAL ABOUT LDN. I HAVE HEARD NEGATIVE AN POSITIVE FEEDBACK ON IT. i AM GOING THROUGH A TRANSITION OF RELIEVING MYSELF OF MEDICATION THAT WAS OF NO USE TO ME ANY MORE. SINCE DOING THAT, I HAVE FOUND THAT EVEN THOUGH I AM STILL ON PAIN PILLS, THAT I AM A LITTLE BIT MORE ACTIVE AND FUNCTION BETTER IN SOCIETY. IF THIS LDN IS WHAT IT SAYS IT CAN DO THEN I MAY BE WILLING TO TRY IT AFTER DOING MORE RESEARCH ON IT. I HATE THOUGHT IF BEING PUT BACK ON TO ANOTHER PRESCRIPTION CAUSE I JUST DID AWAY WITH A HUGE AMOUNT. I ALSO SUFFER FROM OTHER HEALTH COMPLICATIONS THAT I DON’T KNOW IF I TAKE EVEN TAKE LDN BECAUSE OF SOME OF MY HEALTH PROBLEMS. I HAVE HAD 1 MINI STROKE AND 1 MINOR HEART ATTACK PLUS A LOT OF OTHER HEALTH CONDITIONS. AFTER MY OWN RESEARCH AND TALKING TO MY DOCTORS, I GUESS I WILL MAKE THE DECISION OF WHETHER TO GO ON IT OR NOT.
November 21st, 2012 at 8:43 am
I have been on LDN .7 mg only for two months. My fibro, Reynaud’s and Syrogrens all better. It took two weeks to kick in. Fibro fog gone. Energy higher. Still have to watch out for overdoing. After 4 years of hell I have my life back. My husband is thrilled. I will try higher doses if I need to. Nothing else ever worked.