LDN dosing for fibromyalgia and ME/CFS

@jmcaleavey Let me look around for a resource for you. This has been a lifesaver for my husband with chronic pain, probable central sensitization, fatigue, and his rheumatoid arthritis. He has diabetes and Stage 3 kidney disease, so many meds are off the table for him. After one month of titrating up from .5 mg to 2.5 mg he is still looking for the complete sweet spot, but he has his life back! His doc seldom uses more than 3 mg.
He is in a pain rehab program, with PT, a pain doc, a counselor, a Pharm D monitoring and managing his many meds. He has gone from a presence in the recliner to a participant in life. Even wrestle with our daughter's pup on the floor yesterday, and shampooed carpets for me.
So, to answer your question, Mayo doesn't have an article right now but here is one from Cornell:https://weillcornell.org/news/what-you-need-to-know-about-low-dose-naltrexone
Maybe you can ask your doc to refer you to a pain management doc or a doctor of pharmacy. You will also need access to a compounding pharmacy to prepare the med. If there is none near you, a local hospital pharmacy can usually handle it.
Sue

Hi! I have central sensitivity/chronic pain and fibromyalgia, along with other chronic conditions, and I take LDN! It helped noticeably with my fatigue almost immediately when I first started taking it, but I can’t say I noticed it improving my other symptoms, i.e. GI symptoms and pain sensitivity. It’s still worth it for me though to help the fatigue.

When my PCP brought it up to me (she works in Integrative Medicine and has many patients with different chronic pain disorders), and I did a lot of research (otherwise known as Googling, carefully) before I decided to start it. She frequently prescribes it (I can also give you the name of the specialty pharmacy we use that is reputable and we found has a good price if that helps at all), and specially we agreed I would titrate slowly. That’s what she does with everyone, but for me in particular with my condition, we know already that my body is very sensitive to medication, new activities, environments, etc.

Our plan was to start at .5 mg and increase every 2 weeks by .5 mg until I got to a goal of 4.5 mg (or if it seemed like it felt like enough with less, that was also fine) and we’d see how that went for at least 3 months. The rationale was that of the studies she was aware of and that I found (though there aren’t many and they’re usually small), most found that there was no further benefit for those who took more than 4.5 mg. Some people had enough benefit at smaller doses—it seems to be very individual.

HOWEVER, it turned out that .5 mg was way too activating for me—I felt hyper-alert on my first dose. Unsure if it was a fluke or the placebo effect, I tried it the next day and then I couldn’t sleep, and just felt too uncomfortably “up.” So I had to slow my roll and go down to .25 mg. I titrated by quarter milligrams from there.

All that said lol (long way for me to get to your question), oddly with all my searching intermittently over a year and a half, I have not come across any Mayo Clinic information about it. Because there’s not as much “high quality” research on it, and LDN seemed to fly very much under the radar until all the long COVID cases, despite being so low risk, I’m doubtful there would be much out there.

When I was first looking into LDN, it seemed to me the recommendation to titrate was coming more from the personal experience of the providers, compounding pharmacists, and patients. My sense was it was a more practical approach to minimize any side effects, especially when most people turning to it already have problematic symptoms.

I doubt there’s a high risk to start right off the bat with 4.5 mg, but I’m almost never comfortable starting a new medication at the conventional dose because of my central sensitivity. I wasn’t comfortable running the risk of experiencing potentially uncomfortable (though not harmful) side effects (even though it happened anyway ha). It’s also harder to tell if you might have had a response with less medication—and since most people have to pay out of pocket for LDN from a compounding pharmacy, that might make more of a difference (it did for me).

It probably comes down to how comfortable someone is with the risk of starting with a higher dose.

This is from a few years ago, but a review mentions this about patient instructions to those in the study: “ A “low and slow” approach to titration of LDN dose was used, and patients were verbally counseled that, vis-à-vis LDN therapy, “more is not necessarily better.”

And there’s a link to a podcast episode on this page from Weill Cornell Medicine I came across when I first started researching. They interview the Division Chief for Pain Management; he mentioned he starts patients typically at 1.5 mg and titrates from there but some people need less. I could find any specific research to support titration specifically.

Sorry, this post is now getting super-long, but I almost wouldn’t have found out about LDN, so I always like to share my experience if it’s something that might help someone else.

If it helps at all: I mentioned above I had to start very low (.25 mg) because of my sensitive, and worked up to 4.5 mg, increasing st first by a quarter milligram every two weeks. At some point, I got impatient and if I didn’t have adverse effects after a week, then I increased again to speed up the process. I take it in the morning (again, leery of side effects), and found it helped with my fatigue.

Unfortunately, I got COVID last November and it exacerbated my symptoms. My fatigue returned with a vengeance, and my PCP recommended titrating to 6 mg because she inherited some new patients who take a higher dose with good results (she’s now the only person in the clinic who prescribes LDN after someone left). There are anecdotal reports of individuals taking 6 mg I found, but only research that said there wasn’t an additional benefit.

Now, I take 6 mg every morning. My dad has PMR (an inflammatory arthritis that causes extreme fatigue), and he takes 4.75 mg because when we tried to go past that point he was bouncing off the walls.

But, hope that helps, and hope you find some relief, whether it’s with LDN or another way. I do think it’s worth a try and agree titrating is the less riskier way to go.

Here's a recent blog that summarizes the research on LDN for chronic pain: https://www.paintreatmentdirectory.com/posts/low-dose-naltrexone-for-chronic-pain

Thanks for sharing; it’s great to hear about a positive experience with LDN. And that is the same article I came across when I was first looking into LDN 🙂

I hope that more people and providers hear about it, and eventually more providers will feel more comfortable prescribing it. When I first asked about it, I was disappointed to find that the first three of my specialists I spoke with weren’t comfortable looking into it or prescribing it. Thankfully, my new PCP had experience with it. So glad to hear your husband is doing well. Shampooing the carpet is no joke for someone with chronic pain! =)

What symptoms or illness prompted you to ask your Dr about LDN? Have you been taking it and, if so, what symptoms has it helped with? Also can you give some info on your starting and maintenance doses and if you had any side effects?

A good resource for information is LDNresearchtrust.org The tabs across the top have explanations and answers to so many questions about this treatment.

I have a friend and a cousin with this. Friend has heart disease as well as autoimmune. Both, do not know each other but had read about it. Both decided to try this vegan diet and both have no pain. I can see both of them are so happy and look and feel great. I am a not believing the change. They were both pretty heavy and lost lots of weight as a bonus. They both feel that there are so many foods out there that they can choose from that they don't miss the meats they loved. I heard this is just a horrible, horrible disease. I would try it, can't hurt you.

Facebook has a support/information group where people share their experience with LDN and it offers helpful information on starting and getting to a maintenance dose. Check FB site: "Low Dose Naltrexone (LDN) for chronic illness and infections".

Hi @ripley- I’m so sorry for the delayed reply. I wrote this a few days after seeing your question, only for it to get eaten by the intense when I tried to post it, then the same thing happened earlier today.

But sure, I’m happy to share.

I noticed your posts in both the PMR group and here, and I’m so sorry you’re navigating the chronic pain loop.

I wanted to preface sharing my LDN experience by saying first I feel it’s important to rule in/out PMR or other conditions if need be. One risk factor for developing fibromyalgia is untreated or poorly managed pain from another condition. And since fibromyalgia can overlap with other conditions, one can feed the other, or the treatment’s not always the same. And it is very possible and well-documented someone can have an autoimmune condition with negative inflammatory markers (I’m one of those).

And second, there is treatment for fibromyalgia. Unfortunately, it’s not straightforward, simple, or easy to access… And while medication has worked great for some, for those of us who don’t tolerate or have concerns about medication, it can be even more challenging (I’m also one of those…I don’t tolerate medication well =\) And all the barriers are compounded because many providers treat it like a throwaway diagnosis, and we can internalize that too.

It’s been my experience that the most helpful (and some would argue the research suggests the most effective with the least side effects) treatment has been PT and OT designed specifically for chronic pain and incorporates pain neuroscience—it gets to the root of chronic pain, where it’s happening in the brain, and focuses on getting you back to what you want to do, even if it might look different than it did before. I don’t believe LDN alone would be effective enough for me to make up for all the pain rehab work I’ve done.

Oohkay, I know that’s a lot of preface. I’ll get off my chronic pain soapbox now >_< Just felt like I had to say that so as not to make it sound like LDN is a miracle drug.

To your questions:

I have multiple chronic conditions; we suspect the time it took to diagnose and treat it properly and some really wrong turns with doctors and PTs that exacerbated my condition(s) eventually led to central sensitivity syndrome. This happens when the central nervous system (brain) experiences maladaptive changes in an effort to protect you from pain. If pain is normally meant to be a warning sign in a dangerous situation, it starts setting off a fire alarm in response to more and more situations.

Within that, I have small fiber neuropathy, POTS, seronegative spondyloarthropathy (an inflammatory arthritis), hypermobility spectrum disorder, and I was just diagnosed with fibromyalgia. Getting COVID last year may have been the drop that tipped my cup over into fibromyalgia.

I primarily got interested in LDN for the fatigue and GI symptoms I have related to those conditions, and also for the potential to improve my pain sensitivity, plus it’s reputation for having nearly no side effects (because I am sensitive to medication).

Much of the little research out there I found while checking it out suggests it helps with fatigue. Some studies show it’s helped IBD or worked as an anti-inflammatory. LDN calms glial cells, and I’ve read more recently that scientists are researching the role of overactive glial cells in chronic pain.

A neurologist I saw brought it up. She doesn’t prescribe it, but knew if it from a pain specialist she works collaboratively with to assist her patients. I didn’t feel comfortable seeing him, but what she told me about LDN’s proposed mechanism of action and low risks, I was intrigued. I asked around with my care team, and it turned out my PCP has experience with it. She works in an integrative medicine clinic and learned about it from one of her colleagues.

Regular naltrexone has been about a long time and has a solid safety profile. At a fraction of the regular dose, LDN is potentially even more benign. The most reported side effects are vivid dreams, symptoms of anxiety or insomnia. My neurologist explained the proposed mechanism of action is that LDN temporarily inhibits endorphin receptors. After a time, the body/brain believes you’re low on endorphins and creates more to make up the deficit, but eventually the LDN stops blocking the endorphin receptors and now you have more endorphins circulating.

For some people, this might create the same benefits as a “runner’s high” or doing something that boosts your endorphins naturally, improving mood; energy; digestion and maybe even pain. It sounded like such an elegant explanation. It was like in pill form a whole bunch of the things I was already trying to achieve through PT and other means.

Looking at it that way, the side effects make more sense. But the half life is so short that with a negative reaction, I figured I could stop it and hopefully recover quickly.

I tried to avoid the side effects by taking the LDN in the morning instead of evening (it’s usually recommended at night because that’s when endorphin release peaks, apparently). At the beginning and a few times when I increased my dose I felt too activated, too alert, and had trouble sleeping. That faded fast after I adjusted the dose and titrated more slowly. Otherwise, I didn’t have any other side effects.

The plan was for me to start at .5 mg and titrate every 2 weeks by another .5 mg until I got to a goal dose of 4.5 mg. But, I had the above side effects so I went down to .25 mg and went up every 2 weeks by .25 mg. After a while I got impatient and started waiting just 7 days before increasing. I only remember having issues with side effects a maximum of three times in all the time it took me to get to 4.5 mg.

After I got COVID and the fatigue and other increases in my symptoms didn’t clear, my PCP had me increase to 6 mg. Most research shows little or no benefit above 4.5 mg, but there are random reports of people taking 6 mg. My PCP inherited some patients who were on a 6 mg dose successfully. I don’t really notice much of a difference, but I just kept it up. Either way, I feel it was worth it.

And…that’s my marathon explanation! Hope it helps someone out there.

Here are two articles I found helpful while considering it:

Hello and thanks for posting your extensive report on LDN. I'm about to approach our PCP to ask for a prescription for my husband and have been gathering supporting documentation. I'd like to prepare my own solution of ground up 50mg tablets in 50 ml of sterile water so that titrating up or down can be easily achieved . If he won't go along with that idea [which apparently others have used] we will have to use a compounding pharmacy. You say that you will provide the name of a reputable one. For starters do you recommend a Rx for 0.5 mg and then take multiple doses per day when you want to move up to 1 and 1.5? I'm just not sure what format to request our doctor to write the prescription for.
I'm a great believer in watching out for internet privacy. That said, I'd rather not give you my real email address for the info on the compounding pharmacy by posting my address on this public forum. If you don't want to post the pharmacy name, can you suggest a route which will respect your privacy and mine?

Thanks for being so helpful by sharing your experiences and the results of your searches for info.