Are there any known drawbacks to LDN (brain opiate receptors) ?

[Bansaw]

I have approached two doctors asking them to consider prescribing me LDN.
One wants to refer me to a rheumatologist or infections disease specialist (as I've Lyme CFS, POTS etc.), and this looks like an expensive route with a possible "no" at the end.

The other doctor, who is a little unorthodox and I was hopeful of a good response, said that she didn't want to prescribe anything that worked on the opiate receptors in the brain, because that might have long term consequences.

I've not seen much on long terms negative effects of LDN. Has anyone got any insight on reported negative consequences of LDN ?
From what I've read, I've not seen people complaining of anything seriously negative about LDN.

(I'm in NC. I don't know any doctors in this area who might be open to prescribing LDN.
I did see Dr.Lapp one time in Charlotte, but that was ten years ago. I don't know if he's open to LDN or not).

 

[Scarlett*54]

Greetings,

I have CFS, Fibromyalgia & intermittent bouts of Long Covid. My holistic provider started me on LDN 1/4 mg with the goal of increasing it up to 2 mg.

I have to say that it helped me a lot with energy & stamina. But I had severe insomnia with it no matter the dosage or time of day that I took the LDN. My mind would race all night with terrible anxiety and fears. We finally believed that it was "serotonin syndrome" as I also take Trazadone daily for sleep.
So, I chose to quit the LDN. It's too bad b/c I know that it's helped a lot of people.

Hope that helps!

 

[kushami]

Hmm, I don’t think anyone has studied the long-term use of low doses.

This is from an article published in 2014:

No hard data on long-term safety​

Even though naltrexone has a long history of safe use with a wide range of large dosages, we know very little about the long-term safety of the drug when used chronically in low dosages. The low dosage is often cited as a reason for clinicians and patients to not be concerned about safety. However, we must be open to the possibility that the unique clinical effects possible with the low dosage could also present new health risks. There are no reported serious concerns to date. While inhibition of immune system parameters could theoretically raise the risk of infections or cancer due to decreased immunosurveillance, there have been no reports of such a side effect at any dosage of naltrexone.

https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/

 

[Bansaw]

I have CFS, Fibromyalgia & intermittent bouts of Long Covid. My holistic provider started me on LDN 1/4 mg with the goal of increasing it up to 2 mg.

I had a brutal struggle with insomnia after trying Keto, so reading that LDN might trigger insomnia is a concern. However, I might be still open to trying it because I do need more mental energy. I believe I have some neuro inflammation, and LDN works on that.
I was on Trazadone but stopped that a while ago. Being off the computer early helps, blue-light blocking etc.
So far two doctors have not responded positively about prescribing it for me, so my search goes on.

 

[Bansaw]

Hmm, I don’t think anyone has studied the long-term use of low doses.
This is from an article published in 2014:
https://pmc.ncbi.nlm.nih.gov/articles/PMC3962576/

It would be hard to believe that artificially effecting receptors in the brain wouldn't have any side effects, but people have been taking LDN for a while now. I'm open to LDN as it seems to have made a big positive impact for so many people, but I'm eager to know of any negative effects before I launch into it.

 

[Scarlett*54]

I had a brutal struggle with insomnia after trying Keto, so reading that LDN might trigger insomnia is a concern. However, I might be still open to trying it because I do need more mental energy. I believe I have some neuro inflammation, and LDN works on that.
I was on Trazadone but stopped that a while ago. Being off the computer early helps, blue-light blocking etc.
So far two doctors have not responded positively about prescribing it for me, so my search goes on.

Typically, LDN at low doses is only available at compounding pharmacies. And insurance does not cover meds from those types of pharmacies or dosages. It can get pricey paying out of pocket, but I believe it's worth it if you can swing it. I got mine through a holistic physician.

 

[kushami]

I have to admit that I know next to nothing about opioid receptors, which is a bit embarrassing considering I have tried LDN.

It did seem to be helping me, but it also seemed to cause abdominal cramps, which weren’t very nice and made me nervous because they resembled pain I had relating to bowel problems and bowel surgery many years ago.

I imagine there might be a thread on here somewhere with a nice summary on opioid receptors from Pyrrhus or one of our other helpful explaining folks.

 

[Wishful]

It sounds like your doctor has a non-founded belief regarding opioids, for some medical problems other than ME. The lack of reported complaints about LDN seems to be strong evidence of a lack of significant problems. I'll take statistical evidence over "beliefs".

I had excellent results from LDN (blocking ME-induced pain, but no other benefits) with no negative effects. I stopped using it with no noticeable consequences; I just didn't need it anymore.

 

[light24bulbs]

Yes it has neurological side effects that are hard to describe. They vary from individual to individual. You have opioid receptors all over your body in every cell and off-target effects abound, no doubt.

For me I have to keep my doses between .3 and .5mg which is really a threshold dose, a tenth of many others. Even at that dose, the vivid dreams decrease the quality of my sleep. At higher doses I lose a lot of self regulation when speaking and it's not great. A bit like being drunk but less fun. It also increases my generalized anxiety, proportional to dose.


It does move the needle for me and enable more light activity like walking which in turn has a positive feedback. Most of my crashes have happened when I've gotten so sick of being on LDN I stopped taking it. I wish now if stuck with it but wow is it annoying for me to be on and decreases the quality of my social life.

 

[Bansaw]

You have opioid receptors all over your body in every cell and off-target effects abound, no doubt.

For me I have to keep my doses between .3 and .5mg which is really a threshold dose, a tenth of many others. Even at that dose, the vivid dreams decrease the quality of my sleep. At higher doses I lose a lot of self regulation when speaking and it's not great. A bit like being drunk but less fun. It also increases my generalized anxiety, proportional to dose.

I'm hesitating now with LDN because my sleep is already poor quality, with on-off battles with insomnia.

Also, I'm not sure how morphine's effectiveness is changed because that works on opioid receptors too.
My uncle just died of cancer and needed very regular morphine dripped in. I don't want to be in a situation where pain killing doesn't work... if that's even possible with overuse of LDN(?)

 

[light24bulbs]

Are you not currently on opiates now? You would just stop taking LDN. I think you're imagining a situation that doesn't really apply.

It may not negatively impact your sleep the way it does for me. I'm special in that every drug I take gives me some form of neurological issue.

Nothing has moved the needle for me so much as LDN in terms of PEM, outside of helminths which are even more of an ordeal.

 

[Bansaw]

Are you not currently on opiates now?

I'm not on anything at the moment. The only thing that noticeably helped me was Acetyl-L-Carnitine, but then only for a few weeks before it faded.
I think I have neuro inflammation + maybe poor lymph drainage because of over-computer use (with my job etc.), and I have significant PEM if I push too far. I do ten 20 mins walk, weights but only for 2 mins at a time etc.
Also looking into Stellate Ganglion Block for historic PTSD.

 

[light24bulbs]

Hey if I were you it would be the first thing I would try. At sub milligram. It's relatively inexpensive, easy to talk your doctor into giving you a prescription for, thought to be very safe, and if it does something weird just stop taking it. It helps so many people with CFS

 

[Bansaw]

Hey if I were you it would be the first thing I would try. At sub milligram. It's relatively inexpensive, easy to talk your doctor into giving you a prescription for, thought to be very safe, and if it does something weird just stop taking it. It helps so many people with CFS

true, I see many people have been helped by it. I asked two doctors already and they refused so far. I contacted another one in my area who is CFS focused but he's not responded yet. Not as easy to get it here in the U.S. in my area, I think doctors are cautious.

 

[Wishful]

I'm hesitating now with LDN because my sleep is already poor quality, with on-off battles with insomnia.

Some people report sleep problems from LDN, but many others don't. There's no way to know what effect it will have on you until you try it. I can't recall anyone reporting that it cause permanent worsening of sleep even after discontinuing it.

Not as easy to get it here in the U.S. in my area, I think doctors are cautious.

Fear of litigation I expect. You might try asking for a really limited amount, such as 10 doses. Then again, with America's litigation concerns, that might not help. Lawyers' approval for drugs for doctor's legal safety might be more important than FDA approval for patient safety.