LDN for RLS??

[Friend7]

I wonder if others know about LDN?

I just found out that it maybe can help RLS. LDN, in case you’re unfamiliar, is “Low Dose Naltrexone”. It’s an older medication that has to be compounded into a tiny therapeutic dose for use “off label”. It’s a known to be both an anti-inflammatory medication and an “immune modulator” used most often for the control of many autoimmune diseases, virtually without side effects. It is a very interesting newer medication, that is also inexpensive as it’s compounded from an older medication. It’s mostly prescribed by Integrative MDs and naturopaths in the US.

I have taken LDN myself off and on…mostly on, for over 12 years, to help control a rare autoimmune liver disease.

It is known to work partly by creating a surge of natural endorphins in the body and thus to be able to rebalance an overactive immune response, and it’s been discovered to be a novel anti-inflammatory. It is considered especially helpful for those who suffer from an autoimmune disease, or from chronic pain and it is very slowly becoming more mainsteam. Interestingly, LDN had been found recently to be one of the only meds that’s helpful for Long Covid patients, and this has renewed yet more research.

It is been successfully used as a safer medication for many other serious diseases, including mood disorders and even for cancer. It’s been prescribed more often in the US for chronic pain, fibromyalgia, CFS/ME, depression, and most of all, autoimmunity.

The reason I ask the group if you have heard of LDN or if you’ve known of its potential usefulness for treating RLS, is that I was still taking LDN for years before my gallbladder surgeries in 2021. Since I’m in total remission right now from the autoimmune disease, I decided to take a break from LDN.

But then I developed RLS….

LDN cannot be taken with opioids. As I did have to have IV opioids in the hospital after my surgeries for about a week, and briefly in pill form afterwards, I had to stop my LDN temporarily. I was planning to restart the LDN eventually after recovery and off of opioids, but then didn’t,

However it occurred to me today that since my RLS symptoms first started affecting me badly soon after my surgeries - but ALSO after I quit taking LDN - that maybe LDN might help?

In that vein, I did some very preliminary research today and I found two articles already about using LDN for RLS. This is a segment of one :

“Paradoxically, LDN enhances the effects of opioid agonists by blocking the opioid receptor transiently which causes a positive feedback mechanism that increases the production of endogenous peptides.  Increased levels of endogenous opioids peptides are known to promote healing, inhibit cell growth, and reduce inflammation.  Naltrexone works by binding to the C-terminal pentapeptide of the scaffolding filamin A with strong affinity. Filamin A is also found on dopaminergic D2 and D3 receptors which might explain the effect of LDN on prevention of desensitization to D2/D3 agonists.  This potential LDN mechanism on dopaminergic receptors led researchers, Bear and Kessler, to propose a study to evaluate for beneficial effects of LDN on restless leg syndrome (RLS)5. The study showed that RLS symptoms had improved with the use of LDN.  RLS is typically treated with D2/D3 agonists such as pramipexole or ropinirole. Thus, the researchers suggested that the LDN use would effective in RLS possibly due to facilitated sensitization of D2/3 agonists.”

On the LDN research trust website from UK (where I get most of my most valuable and trustworthy LDN information and news) there IS a short article and video of an MD that states LDN can be successful in treating RLS.!

If you are interested I can share this link with the group.

For myself I’m thinking of going back on LDN as a result of what I’ve just read as long as it’s not been proven to be contra-indicated for RLS - evict us why I’m reaching out to the group.

I’m ok with being a Guinea pig for this experiment as I’m very comfortable already with this medication.

[ChrisColumbus]

Looking back, Joolsg has mentioned it, Amrob was going to try it - perhaps they or others can tell you more

[Amrob]

As ChrisColumbus says, i have tried LDN recently.

My main issue is Periodic Limb Movement Disorder (PLMD) with occasional mild RLS.

Because my PLMs occur mostly when i'm asleep, it's difficult to ascertain how effective an intervention is. Especially given that i also take pregabalin and a low dose of clonazepam.

I started with an ultra low dose of naltrexone. Around 1mg from memory (the usual dose is around 4mg i believe). I had to take it first thing in the morning as it can cause insomnia.

The first batch that i took, i didn't notice any difference to my sleep / PLMD. What i did notice was that i had more energy and stamina when i took it. (I have chronic daytime fatigue that lasts two to three hours most likely the result of the medication i take).

I never increased the dose because of the issue with insomnia.

The second batch that i took, I didn't feel any difference. I wonder whether there was some mix up at the compounding pharmacy because the two batches were markedly different colours.

So, unfortunately because of all the things going on, i can't say definitively if it worked for me or not.

A small number of other people on this forum have tried LDN. Some with great success, others with none. You can search their posts using the search function at the top right of the screen on this site.

[notnowdad]

For 13 years I have been trying to find a dietary cause for RLS. In 2015, after 5 years of closely observing my body’s reactions to various foods, I began posting on the rls.org discussion board for “Non-prescription medicines, supplements and diet” that I could switch my RLS discomforts “off and on” by adjusting the amount of oxalate in my diet. I was eager to find out if my approach could help other people. I had no significant responses for over a year, but I kept posting. A few people asked questions but only one contributed his results during the first three years of my crusade. It took many years, but eventually I was able to develop a group of participants who would consistently exercise the necessary discipline to produce the same results.

Over the past seven years my support for my fellow RLS sufferers included three key new insights that helped to account for why it can be damnably difficult to achieve consistent relief from RLS by using a low oxalate diet.

1) Because of my sensitivity, I could precisely correlate my intermittent RLS discomforts with some vegetables (e.g., fresh artichokes) that are reputed to be low oxalate. After much digging on the internet I found on the website of a food storage warehouse company the information that many fruits and vegetables are typically sprayed pre- and/or post-harvest with an oxalic solution to “preserve freshness and nutrients”. Organic fruits and vegetables are typically not so sprayed.

2) When I switched my daily magnesium supplement from magnesium citrate to magnesium glycinate I had return of RLS discomforts. This led to my understanding that over production of oxalic acid in my liver is stimulated by glycine supplements and that endogenous production of oxalic acid can cause me to have RLS discomforts.

3) Over time I realized gelatinous, meat based soups and stews could also give me RLS discomforts. I attribute this to the glycine in gelatin. Most websites that give guidance on low oxalate diets state that meat and meat products are not a problem. Some of those websites are now mentioning that scientists have learned that eating gelatin raises urinary oxalate.

When I was relying solely on the low oxalate diet for relief from RLS, I would often have some very minor discomforts and/or “leg awareness” where I would be concerned that my legs “weren’t quite right”. I felt like I was always hovering on the edge of an RLS manifestation and I was only one high oxalate “trigger food meal” away from recurrence. Through experimentation I developed a new regimen which removed all remaining vestiges of RLS.

My new program conssts of avoiding ingesting fluoride as much as possible while also avoiding the common refined, bleached and deodorized cooking oils made from seeds (soy, corn, canola, etc.) Fluoride avoidance entails filtering my fluoridated municipal water, eating “organic” to avoid fluoride rich pesticide residues, not using any non-stick cookware that isn’t PFOA and PTFE free, not eating canned goods that may have fluoride in the can lining, not drinking commercially prepared beverages which may have been made with fluoride rich water, and not drinking wine which may have pesticide residue. Fortunately, I don’t use any of the popular medicines that contain fluoride.

When I stopped going to restaurants during the initial CoVid lockdown I took the opportunity to experiment with avoiding the RBD seed oils. At that time I was avoiding fluoride because I thought it impaired my thyroid function. Over the next several months I went from being a person with very severe allergies to seasonal pollens and dust mites to being a person without allergies. It took me a while to realize that maintaining my allergy free state required maintaining both avoidances. Eventually I realized that my remaining vestiges of minor RLS discomforts and “leg awareness” had also vanished.

After being on this regimen for almost a year I seem to have recovered my ability to tolerate much greater amounts of dietary oxalate without experiencing RLS. Several years ago I had the idea that the augmentation experienced by some users of Pramipexole was caused by stress on the liver resulting in excess endogenous production of oxalic acid. I’m now fairly certain that it is the fluoride in Pramipexole and many other popular drugs which contributes to the production of excess oxalic acid. Fluoride also damages the lining of the small intestine which causes poor absorption of fats (lipids) and impairs normal re-absorption of bile salts during digestion. Unabsorbed bile salts move into the large intestine where they damage the colonic mucosa which leads to inappropriate absorption of oxalate. I believe my regimen of avoiding fluoride and the RBD seed oils (which are poorly absorbed) is the key to healing the gut while reducing stress on the liver and thereby healing RLS. I strongly suggest using virgin, unrefined coconut oil as one’s primary cooking fat. Its medium chain triglycerides are the most easily absorbed lipids.