Learn from patients with pain similar to yours

CatchMyPain Community and Pain Diary App to manage chronic illness

LDN (Low-dose naltrexone) - Have you used this?

Jul 20, 2016 10:39 PM

My psychiatrist is the only one of my Drs. I have seen in the last 2 weeks (Rheumatologist and Neurologist) taking my new nerve pain seriously and actively trying to help me control it instead of simply suggesting stop using that arm. (I’m a manual wheelchair user. That is not helpful advice!) I’ve been on the max dosing of the Lyrica/Cymbalta combo (for nerve pain) for so long he (and I) believe it is no longer working. (see my other post Wrist Saga part 2 for info on what is going on w/ pain).

From the research I have done into LDN - Basic PRO: it might work but researchers have no idea why. Basic CON: placebo effect and nothing more.

LDN sounds almost too good to be true. Whenever a drug states that it can treat multiple diseases with different causes (some LDN researcher’s claim it can help people with HIV/AIDS, those with auto immune disorders AND those with cancer) researchers start to get iffy and studies stop dropping out of the spotlight.

“Ironically, LDN promoters may in fact harm research into LDN by giving it a bad name. Researchers may be reluctant to hitch their careers, or funding agencies commit resources, to a treatment that has a dubious reputation. If the research is promising it will still get done, but if anything it is likely to be slowed by the efforts of the LDN promoters.”

(https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/)

The “N” part of LDN stands for Naltrexone.

“Naltrexone is approved by the …[FDA] for the treatment of addictions to opioids and alcohol. At the full recommended dose, Naltrexone blocks opioid docking sites on cells.

At significantly lower doses, Naltrexone has been prescribed as a treatment for a variety of diseases, including various types of cancers, HIV/AIDS, Parkinson’s disease, Alzheimer’s disease, amyotrophic lateral sclerosis (ALS), emphysema, as well as multiple sclerosis (MS) and other autoimmune diseases.”

(http://www.nationalmssociety.org/Treating-MS/Complementary-Alternative-Medicines/Low-Dose-Naltrexone)

“Low-dose naltrexone (LDN) has been demonstrated to reduce symptom severity in conditions such as fibromyalgia, Crohn’s disease, multiple sclerosis, and complex regional pain syndrome. We review the evidence that LDN may operate as a novel anti-inflammatory agent in the central nervous system, via action on microglial cells. These effects may be unique to low dosages of naltrexone and appear to be entirely independent from naltrexone’s better-known activity on opioid receptors. As a daily oral therapy, LDN is inexpensive and well-tolerated. Despite initial promise of efficacy, the use of LDN for chronic disorders is still highly experimental. Published trials have low sample sizes, and few replications have been performed. We cover the typical usage of LDN in clinical trials, caveats to using the medication, and recommendations for future research and clinical work. LDN may represent one of the first glial cell modulators to be used for the management of chronic pain disorders.”

(http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/)

So far, LDN indicates the potential for translational research – nothing more.

“What about the clinical evidence? A search of PubMed for “low-dose naltrexone” reveals only pilot and preliminary studies. The quick bottom line is that there does not appear to be a single medical application of LDN (outside of addiction) that is supported by a class I clinical trial, let alone a consensus of rigorous studies. What we do see is a smattering of pilot studies for a few diseases.”

(https://www.sciencebasedmedicine.org/low-dose-naltrexone-bogus-or-cutting-edge-science/)

From what I can gather LDN has had no clinical trials and the research community is split in its opinion. I’m looking for someone who has used it and there response to it. (and other’s general thoughts on it - after doing some research of course).

Thanks

ArH

Jul 21, 2016 7:16 AM

Awesome educational info for me... Thank you! Hugs love & prayers you can figure out what will work best for you soon! 🙂💕🙏🌸

Sep 21, 2016 11:07 AM

Hi! This response is a little slow, but I have fibromyalgia and I started on LDN a few months ago. It took about 4 weeks to start a noticeable difference, as I started at 1mg/ day and then 2 mg the next week etc until I got to my final dosage of 4 mg.
I sleep better now, and when I wake up I generally feel more rested than I did before. My pain has gone WAY down, as have my symptoms of depression and anxiety, as well as my fatigue.

This being said there are some other factors that I am sure are helping. About a month before the LDN I finished my stressfull science degree, and moved home to my mum's house in the country and did not have to work any more than what I wanted to. I also take a lot of vitamines, and started eating for my A blood type ( which I know the scientific community doesn't necessarily believe in, but I have to say I think it is also helping a lot, but that's another story).

Anyways, now I have moved back to the stressfull real world and so we shall see how my body holds up, but so far my overall impression is that the LDN is a big help!

Hope that helps someone 🌞

Sep 21, 2016 7:15 PM

I urge you to do as much research as you can before jumping down that road! Again I do not want to steer you from trying anything because we are all different and if anything brings you pain relief than I am 100 percent behind you because I know how hard the pain is! I was put on Suboxone to find out later that doctors are now cramming this naloxone down people's throat like methadone without knowing the full affects and of course filling their pockets of money! Just be careful please !

Ready to start relieving your pain?

Join Community