Posted 1/8/2017 3:50 AM (GMT 0)
Hi everyone!
I'm starting this thread to detail my experience with Low Dose Naltrexone. I have refractory UC that is currently being somewhat controlled by Entyvio. That is the only drug I'm currently taking as no others have worked. Remicade unfortunately gave me drug induced lupus, and Humira is not an option (according to my GI doc). So if Entyvio fails and I flare again, I am pretty screwed. I have an extensively modified diet that looks more like paleo than anything else, but not by intention. (Everyone is different, after all.) I've done a pure SCD, GAPS and FODMAPS diet and none of them have worked as pure diets.
Just a side note... because Entyvio acts on integrin and has nothing to do with opiate receptors, I am doubtful that it would interfere with LDN whatsoever.
My bowel condition is pretty good over all right now but I am not in remission. For example in December I got a sore throat from a cold and my bowels started to flare. So the situation is still delicate. But I am having a BM maybe 3-4 times daily max, well formed, no blood.
My doctor was open minded and prescribed me LDN. I have started out at 1.5mg as of three days ago. The contraindications are that you aren't taking opiates, and that you aren't on steroids. Steroids and LDN cancel each other out.
The plan is to stick to 1.5mg for 2-4 weeks, then upgrade to 3mg. I have read that most men seem to do better on a max dose of 3mg, but the upper limit for the LDN protocol is 4.5mg.
So far I am finding that LDN makes me mentally tired during the day, but my body has 2-3x the energy. So it's a bit weird. This may be a short term side effect. My BMs haven't changed, except that my stools are darker. For the longest time my stools have been pale, and I'm not sure why. (My gallbladder is functioning normally.) Now they are turning a dark brown again.
Here is a decent video on how LDN works:
https://www.youtube.com/watch?v=z0p0ykSzy9o
A common misconception is that LDN must be taken between 9pm-2am because that's when the body's endorphin supply is released. The reality is that you take it at night so that you won't experience the discomfort of the temporary blockade. LDN works by temporarily blocking receptors for a few hours so that your body triples its endorphin release, but because the dose is low, the blockade releases in time for those same endorphins to make contact with immune cells. You can create this temporary blockade at any time of day, it doesn't have to be at night.
The theory behind LDN for auto-immune is that our immune systems aren't actually overactive, they are underactive and dysmodulated. I believe this is true because in the years leading up to my IBD symptoms and diagnosis, a simple common cold would land me in bed for a week. When I was younger I could live my life even when I was unwell. The stress of life and poor diet ran me into the ground. Now I have all the lifestyle stuff figured out but my immune system needs to be re-trained. So I am hoping LDN accomplishes this.
For those interested, here is some empirical research. The first study is the most well known, authored by Penn State. If you do a page find for "Crohn's" you can read about LDN's positive impacts. Most of the IBD research relating to LDN is for Crohn's and not UC, but because has broad spectrum effects on auto-immune, I am still taking that data info consideration.
https://en.wikipedia.org/wiki/Low-dose_naltrexone
- A primer on LDN. It is believed that in addition to acting on opiate receptors, LDN also acts on Toll Like Receptors and Microglia, the science of which is complicated. It's my belief that if a UCer tries LDN and it *doesn't* work, then they can rule out Microglia and macrophage disorders playing a role in their disease, which is a HUGE thing to rule out. And if it does work, then you know that these factors in your body are genuinely dysfunctional and LDN is correcting them.
The other thing to note is that LDN may temporarily exacerbate symptoms during the introductory period, but after that things should improve. If your UC is made worse, then you should strongly suspect dysbiosis or a primary pathogen like a parasite. The reason is that LDN up-regulates the immune system which would lead it to renew an attack on invaders. If your immune system is merely dysmodulated without an infection, then LDN should help you to some degree. Again, LDN good for the process of elimination. You can potentially reverse engineer a lot of info about yourself.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3962576/
"The condition with the most scientific support for LDN efficacy is Crohn’s disease (CD) [7, 12, 36]. CD is an inflammatory bowel disease that exerts gastrointestinal tract and systemic effects. LDN has been reported to reduce not only self-reported pain in that condition but also objective markers of inflammation and disease severity (including the severity scores from endoscopic evaluation) [7, 12, 36]. The response rate of LDN in Crohn’s disease may be even higher than that seen in fibromyalgia, with over 80 % of the study participants exhibiting significant improvement [7, 12]."
This website is one of the medical leaders in reviving research into Naltrexone for off-label uses:
http://www.ldnresearchtrust.org/about-the-ldn-research-trust
It has been problematic to get funding for extensive trials because Naltrexone has been off-patent for many years and so there is no profit for big pharma to invest it. Thus most of the feedback on it has been anecdotal.
It doesn't work for everyone. The majority who take it experience improvement but not remission. A small percentage experience total remission (akin to cured). I have read that the best candidates for LDN are the ones who are at the end of a flare and who have mitigating factors like diet under control. LDN + diet is the best combo. People who are on a biologic that is working for them are another example.
OK! That's it for now. I will post again in a few weeks when I'm deeper into the LDN protocol. Cheers.