Low Dose Naltrexone for Multiple Sclerosis, What Happened?

low dose naltrexone for multiple sclerosis

Several years ago, a few studies reported promising results using low dose naltrexone for multiple sclerosis. Yet since that time, follow-up or new studies are virtually nonexistent, even though there have been some promising results and positive anecdotal reports from patients. What happened?

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High doses of naltrexone are typically used to reverse the effects of heroin and other opiates. However, some research has shown that low doses of the drug—about 3.0 to 5.0 milligrams—can be helpful in various other situations, including multiple sclerosis, fibromyalgia, Crohns disease, pain, and even cancer.

Naltrexone, when taken at night before bedtime, is believed to work by blocking opioid receptors between 2 and 4 AM. This interference then results in an increase in the levels of the body’s natural pain relievers—endorphins and enkephalins.

Low dose naltrexone
According to David Gluck, MD, of the site LowDoseNaltrexone.org, “there is no longer any serious question remaining about the efficacy and safety of LDN.” He is referring not only to the use of low dose naltrexone for MS but for other conditions as well.

Gluck bases his statement on the results of numerous studies and trials in peer-reviewed medical journals and thousands of anecdotal reports. He also points fingers at the pharmaceutical industry and its profit-driven motives as a reason for the apparent lack of interest in this drug for multiple sclerosis and other purposes.

Specifically, he states that in his January 2014 article that “Big Pharma clearly uses the potential profitability of any individual candidate drug…to decide whether a new medication will or will not be tested.” He goes on to point out that “any off-patent generic drug [i.e., naltrexone] with a newly discovered usefulness…is for all intents and purposes, made unavailable by our system to the public because of its low profit potential for Big Pharma.”

Low dose naltrexone and multiple sclerosis
So, what studies of low dose naltrexone have been done regarding multiple sclerosis? Not a lot, but here are the highlights.

An often-referenced study is one conducted by scientists at the Multiple Sclerosis Center at the University of California, San Francisco. A total of 60 patients completed the double-masked, placebo-controlled, crossover trial that involved 8 weeks of treatment with 4.5 mg of naltrexone nightly and 8 weeks of placebo.

When taking naltrexone, the study participants reported a significant improvement in quality of life in the areas of pain, cognitive function, and mental health. In addition, they tolerated the drug well and no serious side effects were reported. Physical quality of life factors, such as bladder control, fatigue, and visual function, however, did not improve.

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A small trial conducted in Italy followed 35 patients with primary progressive multiple sclerosis for six months. These participants took 5 mg of low dose naltrexone and experienced significant improvements in depression, fatigue, and spasticity. The price some paid for these results were sleep disturbances, urinary tract infection, or mild agitation. Only one patient experienced a worsening of neurological disability.

Another trial involved 96 patients with either relapsing-remitting or secondary progressive MS and was a double-blind, placebo-controlled, crossover design that lasted 17 weeks. Overall, the authors did not find low dose naltrexone to result in any significant difference in factors such as pain, energy levels, sexual function, emotional well-being, or brain functions. However, the authors also explained that the drug proved to be safe and that a longer trial was needed.

One of the most recently published reports on low dose naltrexone involved its use for inflammation and chronic pain. The reviewers noted that the drug appears to have anti-inflammatory activity in the central nervous system (CNS) through activity on microglial cells.

Microglial cells are the main immune system cells in the CNS and have inflammatory properties. Therefore, evidence that low dose naltrexone could fight inflammation in the CNS is significant.

Without naming multiple sclerosis in particular, the authors of the review pointed out that “LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders.” Since about half of all people with multiple sclerosis experience chronic pain, low dose naltrexone appears to have a place in the treatment plan for some patients.

Bottom line
Low dose naltrexone has demonstrated an ability to help improve the quality of life of individuals who live with multiple sclerosis. Yet this off-patent, inexpensive drug has not garnered the attention of the big pharmaceutical companies. A search of ClinicalTrials.gov reveals no studies in the pipeline.

What has been your experience with low dose naltrexone? Have you ever talked to your healthcare provider about trying it?

REFERENCES

Cree BA et al. Pilot trial of low-dose naltrexone and quality of life in multiple sclerosis. Annals of Neurology 2010 Aug; 68(2): 145-50
Gironi M et al. A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis. Multiple Sclerosis 2008 Sep; 14(8): 1076-83
Sharafaddinzadeh N et al. The effect of low-dose naltrexone on quality of life of patients with multiple sclerosis: a randomized placebo-controlled trial. Multiple Sclerosis 2010 Aug; 16(8): 964-69
Younger J et al. The use of low-dose naltrexone (LDN) as a novel anti-inflammatory treatment for chronic pain. Clinical Rheumatology 2014 Apr; 33(4): 451-59
Khan A. Long-term remission of adenoid cystic tongue carcinoma with low dose naltrexone and vitamin D3—a case report. Oral Health and Dental Management 2014 Sep; 13(3): 721-24

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Comments

I mentioned LDN to my neurologist as something I'd like to try, given that we've tried other meds without success to deal with the pain I consistently have. She was completely uninterested in pursuing the discussion, waving it off as, "I've never heard of it." I'm seeing a MS specialist in a few weeks and plan to ask him about it.
Good on you for continuing to ask about ldn. I too have read up on it & it sounds promising enough for me to want to give it a go. Most ms drugs out right now $60k plus a year dont really do much for me. Ive tried rebif, copaxone, gilenya, tysabri & now tecfidera. I think tecfidera is ok out of all of them I think it has done the most for me. Overall though, with the way the specialists word their questions to you one would think all the meds are successful and working their magic. I beg to differ!
Catherine: Good for you! As health care consumers, we need to take initiative and be as informed as possible. Good luck!
I'm on LDN though my neurologist says that I'm not being treated. Last MRI showed no progression. I'm good with that.
I have always tho't the reason for lack of info and/or trials was what author of this article has stated. How dis gusting and bordering on "criminal" is this behavior!
Yes, Lynda, I agree with you. Thank you for sharing your thoughts on this important subject and let's keep spreading the word about the potential of this treatment course.
I don't know if I'd call it criminal. Big Pharma needs to make money, that's what they are there to do. What's wrong is we don't have enough research for research sake at the university level. We need more funding from our government for pure science to be continued at the University level, not have all advancements needing to be funded by big pharma.
It is literally my life line. 18 months & can't live without it! Not a cure for MS but everyone should get the opportunity to try!
Denny: Thanks for sharing your experience with naltrexone. I hope it inspires others to talk to their healthcare providers and finding someone who will work with them on trying this treatment option. Wishing you continued luck!
I have been taking 4.5ml LDN for 8 years now and I firmly believe it has kept my secondary progressive MS relatively inactive. I have suffered 3 relapses for which I took oral steroids and have fully recovered with no discernible increase in disability. You are right, no profit=no interest.
Where can you get LDN, all pharmacies i've called in my neighborhood only carry 50mg, have never heard of 4.5 mg, please advise, thank you
Tina: Thank you for the question. Your doctor should be able to prescribe it at that dose, or you can try a compounding pharmacy, which can make it at that dose.
Bigellows chemist in New York does compounding of LDN. They ship as well, to US and Canada destinations at least.
What happened ?? Big Pharma and their willing stooges at the FDA happened, pure and simple. When lucrative present and future income streams are threatened, the health and well being of the animal human takes a back seat. The day of "Do no Harm" has sadly been replaced by "Shelter all income streams" !
LDN is readily available through compounding pharmacies. Belmar Pharmacy currently compounds 90 tablets for $46. A prescription is required. You can find the latest information on LDN on the website: LDN.org. I hope your readers find this helpful.
Terri: Thank you so much for sharing this information. Individuals should check all possible avenues for sources of LDN.
I started on LDN in early 2007, a month after being diagnosed with Primary Progressive MS. I thank God for Dr. Bahari, who first theorized this drug could help with MS. I feel it has been my savior. I was going down hill fast when I was first diagnosed. I believe my relative lack of progression is due to LDN.
Alexandra: I'm glad to hear LDN helped you! Wishing you continued success..
I was diagnosed with ms in june 2012. Since then i've been on betaseron for six months, then almost a year on avonex and all of 2014 on the 4.5 mg nightly dose of ldn.I'm doing somewhat ok on ldn. [a lot better compared to betaseron and avonex] .I take most of the supplements advised by direct-ms.org. St.john's wort is very important to me. I may try tecfidera in the near future. I am a 60 year old greek.
Hi Nikos, you sound like you have a similar MS to me and I too am off all MS drugs after trying them for years with no benefits. I take LDN 4.5mg. I take supplements and what I have found is that taking 2000 mg of Curcumin and cutting out gluten and a lot of dairy has changed my life. No lesions and have been able to leave my cane at home a lot of the time. Have lots more strength in my legs and little fatigue. Just thought that it is worth you trying this for a few months and see how you go. All the best Wendy
I started LDN about a week ago and I am so impressed! I've had no symptoms up until a few months ago....numbness in my legs and feet with the foggy/lightheaded feeling. Since starting LDN I no longer have the foggy feeling....I actually feel motivated and want to get out of the house and do things. The numbness and cold feelings in my legs are gone...my toes feel cold/numb at night into the morning until the LDN starts working. I'm so happy I found this and that my neuro prescribed this for me when I asked. She doesn't promote it for stopping disease progression. I have an MRI in a week...it's been a year since my last one. I'm hopeful.
PJ Doyle, thanks for sharing your experience with LDN. It's so good to hear that you are having such a positive response. Congratulations on taking the initiative and asking your doctor. Perhaps this will prompt others to have this discussion with their doctor. I wish you continued success.
it will be almost 2 years in June that I started taking Naltrexone. I take 3 mg daily, 4.5 was too strong for me. I had been on Copaxone Injections for 2 years prior to that. I stopped them in May of 2012. I actually think the Copaxone made my MS sx a lot worse. I was thinking I would be in a wheelchair soon. I felt better after stopping Copaxone and felt even better after starting the Naltrexone. My neuro MD prescribes it for me even though she always recommends the MS drugs. She did say at my last appt, that'"if I didn't know you had MS, I wouldn't know it by looking at you" I haven't had a relapse in years, thankful to the Lord. The most bothersome sx I have is fatigue, but thankfully, I take Adderall once a day, that is a big help. sometimes Im bothered by numbness and pain in my right foot, but that doesn't happen every day, only when I'm on my feet a lot. Highly recommend Naltrexone, cant hurt!
Hello. Here is my experience with LDN. I am happy with LDN and have been taking it for over 10 years and have not had a full-on relapse in that time. I have what I consider a mild case of MS. I would get numbness creeping from my extremities up toward and on to the rest of my body. This happened 3 times starting in 2000. Each time I was treated and the symptoms eventually subsided. First time It happened the symptoms were treated with thyroid meds (turns out I also have hypothyroidism) and anti-inflammatories. The second time in 2002 I was treated with oral steroids. The third time in 2003 or 2004 with intravenous steroids. That was when I was diagnosed. The ABC type injections that the neurologist recommended were very expensive and sounded worse than the disease in my case, though maybe not for those who have more progressive symptoms. I did research and found out about several alternative treatments and asked my GP to prescribe LDN. She would not. A year and a half later when she went on maternity leave I asked the substitute doctor and he was open and did. I have been taking it ever since. Once in a while I might experience some tingling in my hands or "banding" around my torso, but they always go away pretty quickly. Over a year ago I had some body aches all over for a couple of weeks, but that might have been caused by the flu. I am not sure. It may not work for everyone, but I believe that people should keep safely trying different kinds of treatments until they find what works for them. Best wishes for everyone.
My 24 year old daughter has been diagnosed with MS. Lesions found after MRI. Left arm and leg no mobility. How do I suggest this treatment to her doctor? She's currently on Prednisone treatment and physio therapy. She's a patient at our local hospital in East London, South Africa.
Veronica: As you probably know, not all doctors are receptive to prescribing LDN for MS. You might read up on the use of LDN for MS in the available studies and on the LDN.org website. Then you will be prepared to explain to your doctor why you would like to consider this approach for your daughter when you ask him/her about it. If your doctor is not receptive to your questions or refuses to even consider it, then you might find another doctor who is open to it (if that is possible in your situation). Best of luck to you and your daughter
Veronica, I was diagnosed with MS 2 years ago and it has been a hard journey. The worst part of it was recovering from the IV steroids they gave me in the hospital with the onset and the Avonex I tried for 6 months. I would never suggest that for anyone. I lost 6 months of life that was not necessary. I have taken Tecfideria with no side effects for a year and a half and Naltrexone 3mg for the past 6 months. It was an amazing difference and i can tell a noticeable change with the Naltrexone. i have had my MRI's repeated and no new lesions appeared. Praise God. I have so much more energy and i am not depressed and feeling like the sky is falling all the time. I wake up rested and sleep well. I do have vivid dreams with the Naltrexone. You have to figure out the correct dose. You don't want to get it too high that you can't sleep. I noticed a difference withing a week of taking it. I still take the MS medicine Tecfideria but i don't feel any different on or off it. i guess it is working because i have no new lesions. The disease can be scary at first. i am glad you daughter has your support and i hope she finds the treatment that works best for her.
I would love to try it, neurologist wanted no part of it, wouldnt even discuss it with me. Got a second opinion, he was a bit more open minded, at least listened to me, but no interest in LDN. I have been on varying injectables since diagnosis in 2003. rebif, copaxone, and betaseron. I am really quite lucky, as none have bothered me, no real side effects, just getting tired of injections. But todays visit was all about 3 big oral meds. Which, sounds better than the injections, until you read the side effects! I dont know what to do, keep second guessing myself. onset in 2003, relapse in 06 and 09. thats its. total recovery, 20/20 vision, 2 physical jobs, 2 active young boys. Kind of in a "if it isnt broke, why fix it" mindset. But i read article after article on LDN, and sounds awesome! and so much safer. Was hoping todays neuro would feel differently about LDN.
Don't give up!! I've been on LDN (3 mg) for the last 9 years after being on Avonex for 2 years when I was diagnosed in 2004. I could not imagine having to go back on the "regular" MS therapies! It has been a real blessing for me.
I have been on LDN for several years...no idea how is has helped ...MS relapses continued while on LDN and new lesions on MRIs and activity of old lesions remained. Copaxon showed that it helped control relapses and MRIs shows reduced activity in old lesions and there were two new lesions ...trying high antioxidant MitoQ and getting good results w it...energy and cognitive clarity is improved. Going off LDN and returning to it if I note a difference...my goal is to limit meds to the ones that are working

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