Experience with LDN? low dose naltrexone

[poetinsf]

Dosaging LDN is very tricky, I understand. Maybe dextronaltrexone that doesn't have the dosage limitation of LDN will finally make or break the hypothesis behind it. If you have $2m that you don't know what to do with, please send it to Dr. Younger, please. Just make sure it's not in cryptocurrency.

 

[Hutan]

Low-dose naltrexone for treatment of pain in patients with fibromyalgia: a randomized, double-blind, placebo-controlled, crossover study 2024 Bested+
I think this Danish study is a high quality one. It suggests that LDN doesn't help pain, sleep, mood, function and more in people with fibromyalgia.

 

[SugarSquared]

Thanks @Hutan for linking this thread, because I have a place to share my experience with LDN!

I selected "Other adverse event." Looking online, not many people have experienced my side effects. I had adverse mental health side effects that led to me discontinuing it after 2 weeks on 0.5mg. I put the exact side effects in a spoiler because this requires a trigger warning.

Spoiler

A little over a week into taking LDN, I had depressed mood and suicidal ideation. Despite my mental health history, it felt like the first time I had depressed mood in my life. Like, properly feeling like nothing is worth it, nothing will cheer me up, and no desire to do anything. I can't say it was my first time having suicidal ideation, but it was pretty much the first time my thoughts were so direct about it, including considering methods. There were a couple instances over a few days. This culminated the last day where I was in a zombie-like state where I'm too paralyzed by emotions to do anything. I haven't had that since my anxiety disorder. It felt like a crisis point, so I called my psychologist. She told me she looked into the medication and would bet her career on this being side effects. I've been seeing her for 8 years now, so she knows me and my mental health tendencies quite well. We agreed this switch to being suicidal so quickly was unlike me, so I stopped taking it. Haven't experienced any of that since.

For context, my past experience with adverse mental health side effects due to a medication was self-harm thoughts while taking Prozac. I started it to treat my generalized anxiety disorder. When I talked about it with my doctor, he said to up the dose and see if it goes away. It didn't. I later stopped taking it and switched to sertraline. No problems there. That's why I didn't try upping my LDN dose or reducing it. From my experience, it's not worth it.

I have a history of adverse mental health side effects from medication (also included in the spoiler), so at least it wasn't my first time. It makes sense it happened with Prozac because that is well-recognized with a black box warning, but naltrexone does not have a warning for the same side effects.

Thanks to my past experience, I was able to recognize what was happening and the side effects went away when I stopped LDN. Because of this, I am not touching LDA with a ten-foot pole unless there is an RCT with fantastic results (and even then honestly).

Side tangent: I read somewhere that people with autism/ASD are more likely to have adverse mental health side effects to drugs. Don't know if it's true or not, but if anyone has some papers they could point me to, it could be fun to read into it (if it's real). I know Prozac is known to do it especially when you take it as a teenager like I did, but I had not previously heard a connection with autism.

Thanks for reading!

 

[Concentric_Spiral]

As I mentioned in another thread, I've been on 4.5mg/d of LDN for years. I got the prescription by writing a letter to my family doctor citing the use at a prominent hospital in B.C. to treat ME/CFS to convince her to prescribe it.

I thought it may have given me a very slight increase in subjective feeling of energy at first, but either that disappeared, or I was mistaken about it ever being there. (Or maybe placebo?)

I'm still on it mainly out of inertia and because I've had other medication issues to deal with. Also, I get withdrawal if I miss a dose so I would have to wean off, which is annoying since it's compounded as powder in capsules. Ironically, if it helps with pain (?) maybe it's helping with some of the indirect effects of a rare autoimmune disorder I have (eosinophilic fasciitis).

 

[DHagen]

Just to add to the anecdotes:

I was placed on a schedule where I titrated up from 0.5mg/day to 5mg/day over the course of about a year. Over the course of that year I first declined a bit and then gradually improved - nothing dramatic, but minor reductions in the amount of time I needed to spend in zero- or minimal-stimulation rest in order to enjoy some functionality when "active" as well as slightly more substantial improvements with regard to sensory sensitivity (particularly reaction to aural stimulus). My tinnitus also diminished a bit. I then ran out - no one local compounds the medication, so I have to receive it by post - and, thinking it unlikely that it was having any substantial effect, decided to simply stop. Over the next few months, the tinnitus worsened again and some of the sensory issues came back, while fatigue fluctuated. After about 90 days, I restarted the LDN with a rapid titration back to 4.5mg. Around a month or so following, sensory issues began to improve again. I was actually a bit surprised as, if anything, I was actually pretty skeptical, even hostile to the notion that LDN was of any avail to pwME. Even after this experence, and particularly in light of recent studies (at least what we've seen of them) and all that I've read here, I am perfectly willing to accept that the changes are background fluctuation or otherwise unrelated to the LDN itself. All in all, any effect that I have experienced would fall into the "(very) minor improvement" category at best. I was fortunate that I did not, to the best of my knowledge, experience any side effects. It is possible that the (minor) deterioration I experienced during my period of cessation was due to withdrawl of some kind, but as with the improvement, this also could fall within the expected range of "natural fluctuation."

[edited to correct typo]

 

[BrokenBeaktheBrave]

And my LDN anecdote:

Over a decade ill with MECFS but only diagnosed for 4 years. Took LDN and started too high at 1.5mg and experienced awful mood side-effects and made me sleepy. ME community suggested I start at 0.1mg and increase by 0.1mg per week and only if no side-effects. They also suggested I switch to evenings. Eventually titrated up to 1mg and experienced a profound improvement in brain fog quickly. Overall LDN took me from moderate/severe to mild within months. HRV went from average of 15-20 to 55-60. RHR dropped from 60 to about 50. Sleep dramatically improved - specifically REM and deep sleep. Went from housebound to walking and gentle bike-riding. PEM was considerably less frequent and bounce back was quicker.

Then I got covid and lost all improvements. Also the new infection increased my head pressure dramatically, occipital lymph nodes became constantly tender and I acquired a new symptom - a sensation that my brain was on fire. Was literally packing ice around my head for hours a day over several months. So I stopped taking LDN and the new brain symptoms mitigated a little. Now everytime I try to restart LDN, the brain symptoms come back so I've given up on it for now. But boy when it worked, it was a lifesaver. It literally enabled me to meet my niece for the first time.

 

[Eleanor]

yep - I've had a small improvement in cognitive function since taking LDN but that could easily be coincidence. I'm coming up to a year on it, so will stop for a bit at that point and see if I feel any different.

It definitely affected my sleep in the first few weeks of building up the dose, but I started taking it in the morning instead of at night and that problem soon went away [edit to add, I'm lucky not to have major sleep issues in general].

Coming back to this two years later to say that I noticed no difference on stopping LDN and haven't bothered trying it again. If it did have any effect, it wasn't enough to be worth the hassle and expense of getting repeated prescriptions.