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Success with low dose naltrexone for Autoimmune disorders

Posted by julie868 @julie868, Feb 13, 2020

Low Dose Naltrexone, otherwise known as LDN, seems to be helping a lot of people lately who have all different types of autoimmune disorders.
The information I read sounds very interesting and would like to know if anyone has tried it personally?

The theory that I read says that many autoimmune issues are caused by a deficiency in endorphins, endorphins regulate the immune system. LDN temporarily blocks the body's natural endorphin production for a few hours, this tricks the body into thinking it needs to increase endorphin production. When the blockade wears off, all the endorphins are released into the body, regulating the immune system and providing natural pain relief for the rest of the day. Apparently, LDN can increase your endorphins by up to 300%

LDNscience.org has a lot of information and research about it. You can also look at the writer, Annie Habler (@hablerannie) on Medium.com who wrote an article recently about the fascinating background and history of LDN.

Please let me know if you have tried it and what your experience was like. If you could let me know any details your condition,the dosage you used, any side effects, etc it would be helpful.

Thank you!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

annewoodmayo | @annewoodmayo | May 1, 2023
In reply to @gynosaur42 "My daughter and I were both in a research trial using LDN over 15 years ago...." + (show)
@gynosaur42

My daughter and I were both in a research trial using LDN over 15 years ago. Both of us have autoimmune challenges. Sadly, the primary researcher died before publishing the research results (car accident...no LDN involved :)). My own, biased results are that, after an initial period of interesting sleeps (vivid dreams) and some rashes, I found that joint paint was significantly reduced, I was MUCH more mobile and slept better at night (maybe due to fewer aches). My daughter showed some helpful improvements as well. I'd have to find the box that holds the seemingly zillions of blood and urine and stool tests from before and after to try to make clear sense of this. We both continued on the LDN afterward for a few years. Interestingly, I chose to stop after an unfortunate incident with a hive/swarm of yellow jackets resulting in over 40 stings on my body. After that, each time I took the LDN, my lips tingled uncomfortably and swelled a little. To be conservative, I did not wait this out and sadly discontinued. My daughter had a surprising reaction around that tie as well, when exposed to agave (which we'd been told to avoid during the testing period but encountered as a hidden ingredient in a food). The primary investigator's best guess when consulted by our physician was that the stings affected my immune system, which changed my response to the LDN. I can't remember why the agave was contraindicated while using LDN. Neither of us had any other reactions that seemed linked to the LDN or were negative in any way. I often think of returning to try this now that my arthritis is significantly more impactful on my daily living but haven't had time to check where the research stands now. Hope this is helpful to someone.

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Yes, this is very helpful! Thank you!

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Hi | @dwalker48 | May 1, 2023
In reply to @momsys "I use San Diego Compounding Pharmacy. They ship anywhere in the US and are the best..." + (show)
@momsys

I use San Diego Compounding Pharmacy. They ship anywhere in the US and are the best prices I could find.

Jump to this post

My search has found that CareFirst Specialty Pharmacy in New Jersey is more than half the price of any compounding pharmacy in San Diego for 120 ea x 4.5mg tabs. My San Diego neurologist prescribes and recommends its use for most autoimmune disorders.

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 1, 2023
In reply to @dwalker48 "My search has found that CareFirst Specialty Pharmacy in New Jersey is more than half the..." + (show)
@dwalker48

My search has found that CareFirst Specialty Pharmacy in New Jersey is more than half the price of any compounding pharmacy in San Diego for 120 ea x 4.5mg tabs. My San Diego neurologist prescribes and recommends its use for most autoimmune disorders.

Jump to this post

@dwalker48 I’m curious about the LDN that you are using. You say that the neurologist recommends it’s use for most autoimmune disorders. Is it mostly for pain relief? Is it addicting?
Were you finding that most doctors weren’t paying attention to your complaints of pain?

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1 reply
Mentor
Becky, Volunteer Mentor | @becsbuddy | May 1, 2023

@sandbarry1 @bayhorse @annewoodmayo and others interested in LDN. This article gives a very good overview on naltrexone.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
Has its use made a difference for you?

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suetex | @suetex | May 2, 2023

I have PMR and Crohn's and have been on LDN since mid 2019. I asked my rheumatologis' PA for it after reading about it. My PMR hadn't been diagnosed yet and I had a lot of pain. LDN stopped my "non moving " pain in 2 days and it also healed my small intestine in a longer time. (2months?) It was loaded with ulcers and very much a bother. Now I can eat ruffage again. It has two isomers of the drug and they perform different tasks. One does the endorphin thing by covering the opiate receptors temporarily, and the other influences the microglia in the brain to not send out inflamatory signals. I suspect this is what healed my small intestine. Most American docs don't know much about it. But my GI PA tells me that the group that regulates them is researching it and something might change soon. 80% of the Crohn's patients who have tried it have been helped.

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Hi | @dwalker48 | May 2, 2023
In reply to @becsbuddy "@dwalker48 I’m curious about the LDN that you are using. You say that the neurologist recommends..." + (show)
@becsbuddy

@dwalker48 I’m curious about the LDN that you are using. You say that the neurologist recommends it’s use for most autoimmune disorders. Is it mostly for pain relief? Is it addicting?
Were you finding that most doctors weren’t paying attention to your complaints of pain?

Jump to this post

Becky, started LDN 7/2020 for PMR pain and have continued ever since. It helped relieve the pain and helped me to get off prednisone that was prescribed by rheumatologist. My neurologist believes it is slowing down side effects and progression of GBS/CIDP, another serious medical diagnosis, especially at my age of 82. My doctors are very concerned about my pain level at each visit and any new pain since last visit. If your doctor is not concerned, it's time to seek a doctor that is. I hope this helps and wish you peace and healing.

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bayhorse | @bayhorse | May 2, 2023
In reply to @gynosaur42 "My daughter and I were both in a research trial using LDN over 15 years ago...." + (show)
@gynosaur42

My daughter and I were both in a research trial using LDN over 15 years ago. Both of us have autoimmune challenges. Sadly, the primary researcher died before publishing the research results (car accident...no LDN involved :)). My own, biased results are that, after an initial period of interesting sleeps (vivid dreams) and some rashes, I found that joint paint was significantly reduced, I was MUCH more mobile and slept better at night (maybe due to fewer aches). My daughter showed some helpful improvements as well. I'd have to find the box that holds the seemingly zillions of blood and urine and stool tests from before and after to try to make clear sense of this. We both continued on the LDN afterward for a few years. Interestingly, I chose to stop after an unfortunate incident with a hive/swarm of yellow jackets resulting in over 40 stings on my body. After that, each time I took the LDN, my lips tingled uncomfortably and swelled a little. To be conservative, I did not wait this out and sadly discontinued. My daughter had a surprising reaction around that tie as well, when exposed to agave (which we'd been told to avoid during the testing period but encountered as a hidden ingredient in a food). The primary investigator's best guess when consulted by our physician was that the stings affected my immune system, which changed my response to the LDN. I can't remember why the agave was contraindicated while using LDN. Neither of us had any other reactions that seemed linked to the LDN or were negative in any way. I often think of returning to try this now that my arthritis is significantly more impactful on my daily living but haven't had time to check where the research stands now. Hope this is helpful to someone.

Jump to this post

thanks much for the information. Do you recall what doses you and your daughter were taking?

REPLY
jamiealiene | @jamiealiene | Dec 3, 2023
In reply to @bandruid7 "YES! LDN was a huge game changer for me with my autoimmune symptoms. I started out..." + (show)
@bandruid7

YES! LDN was a huge game changer for me with my autoimmune symptoms. I started out on 1mg then got up to 3mg.
Unfortunately, I had to get a new primary care provider who rolled her eyes at it and refuses to prescribe it for me and now my symptoms are so bad that I'm almost totally disabled.
I had my prescription filled at a local compounding pharmacy.
The only side effect I had was a temporary mild insomnia that resolved after two weeks.

Jump to this post

It’s been forever since you posted this, but I thought I’d let you know that I get my low dose naltrexone from a website called ageless.com (I use amounts 1-3mg)
I spent about $25 a month for this medicine.

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tdosch | @tdosch | Dec 3, 2023

I was on it for long term Lyme's. It was wonderful until next Dr pulled me off it as unecessary

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