low dose naltrexone
 

Hi,
Have anyone tried this medication before? Is it effective and at what dose? My pain doc just prescribed it, 50 mg starting with 1/2 tab and then advance to 1 tab per day. My RSD pain flares resulted from a bad LSB are not controlled and I need to try to some medications to calm the nerves. I have been on Lyrica 225 mg at bedtime for my pain for years and I am also using ibuprofen as needed. Oral steroid was used for a week which helped a bit but the improvement was reversed to some degree. Any other medications which would help.
Please advise and thanks so much!
numb

Hello Numb,

I can't speak from personal experience on LDN though it certainly does seem promising. Not questioning your doctor but I just wanted to ask about your dose. You mentioned starting at 25mg. Most of the research I have seen on LDN for CRPS, fibromyalgia and MS is at a much, much lower dose (4.5 mg built up slowly) that has to be compounded.

I have no idea if the effect is the same at higher doses but it seems you might be more likely to experience side effects. If you have trouble with it maybe compounding at a lower dose would help.

I hope you find relief soon, :hug:

Thanks for your reply! The pharmacy said the standard dose is 50 mg for this drug. If I want to start at much lower dose, do I need to compound it. Very confused.

Hi Numb,

It is correct that 50mg is the lowest dose commercially manufactured. However, Low Dose Naltrexone is given in extremely small doses not available commercially and must be compounded. There is good information on it from CRPS pioneer and researcher Dr. Pradeep Chopra here.

Low Dose Naltrexone and chronic pain - Pradeep Chopra, MD | LDN Research Trust - Low Dose Naltrexone

It discusses compounding and dosage at the end of the article. Dr. Chopra does mention potential for liver problems at doses of 50mg and higher so not sure that would be best for you long term. LDN takes a while to work its magic so it is not something you'd take for just a brief time.

Hope this helps.

Numb,

Dudley's Low Dose Naltrexone Sites

The protocol is start low and go slow.

Side Effects and Dosing of LDN - Dudley's Low Dose Naltrexone Sites

You can take your 50mg pill, put it in 50mgs of distilled water, when it melts shake the container. Tilt the jar to allow the sediment to collect on the side bottom of the jar. Don't shake again. I transfer the clear LDN I just made this way into a clean container, pouring it out carefully so as not to disturb the sediment.
How to Make LDN at Home | River News Desk

I use an eye dropper measure to siphon up the amount of LDN I am taking. By mixing it myself I can more easily change the dose. I take mine in a swig of pineapple juice which cuts the bitterness.

How to LOW DOSE Naltrexone(C) (LDN) - YouTube

I am going to start LDN again on Monday. I will start at 2mgs and then build up to 4.5mgs. I also skip a day, other people I know skip 2 days a week.

Facebook has an LDN site called Got Endorphins, which has loads of information.

WOW> I about had a heart attack when I read what your doc wrote. By definition that isn't LOW dose naltrexone.
I don't know where you are and what kind of doctor you are seeing. It might be worth a second opinion. LDN (as others mentioned) must be compounded. It has been used successfully by MS patients (my husband did for years) and now is being used in CRPS though I believe it is still considered trial or experimental so to speak (I'm not using the right words).
Anyway, LDN is very safe (up to 4/4.5 mgs) with little to no side effects which is why many doctors are willing to prescribe it. However you cannot take with any opioid pain relievers.

Numb,

Just want to add that the standard dose is 4.5 mgs, with outlier variations of 2.5-12, for CRPS.

I started taking LDN in June 2015 with great results. Because it helped so much I was able to stop taking neurontin in the winter and the best part is I did not need to take other meds. I think LDN is a miracle. But what helped me to regain my ability to walk was the addition of Aqua PT. I believe you need both LDN and Aqua therapy to overcome RSD.

Last year at this time I spent most of my day huddled under an electric blanket. Walking to the car on crutches exhausted me. Regular PT helped me, but was torture. In the past I had floppy ligaments, foot drop, a twisted foot, excessive color changes, allodynia, I slept with a stool to keep the blanket weight off my feet. I could not stand in the shower. Just about anything could knock me over. My pain was off the charts. I could never get warm. I could not drive, shop, read, think.

I am not 100% better, my CRPS is now called mild, so it hasn't gone, but it's better. I still cannot hop, skip, jump or run on land, but I can in the water. I still can fall over if I step on a crumb, but my balance in general is much better, I am able to sleep most nights without the stool, I can stand in the shower, not long, but for a few minutes and I can get in and out of the tub without help. I can walk around the supermarket with a grocery cart. I can carry small bags into the house one at a time and drive short distances. I can wear shoes again, mostly okabashis, not fashionable, but better than no shoes before. I can open heavy doors while carrying my purse and cane.

Thanks for your reply! Your feedback was so encouraging. I have been feeling down at times when I feel I am running out of options to fight my RSD pain. Glad to hear that LDN and aqua therapy can reduce your pain from severe to mild level. May I ask you some questions. Did you try the blocks before you try the LDN and aqua therapy? When you said Aqua therapy? Do you mean water (pool)therapy? Warm water with exercises. Am I correct?
I would really appreciate your feedback.

I have a feeling my PM doc is not familiar with the low dose. I am so glad to come to this site and ask questions.

HI,
Great info! I have some questions about mixing it. Do I have to keep the mixture in fridge and how long I can keep it in there? Is my interpretation correct? 50 ml distill water mix with one 50 mg tablet. 1 ml mixture=1 mg tab.
At first, it seems so difficult to mix it myself. But after seeing the video, it is so much easier. Thanks. I think i will feel confident to give it a try.
Numb.

I am so glad I did not try what my pain doc prescription yet because it did not sound right to me. After reading the links provided by others, I now have a better understanding of this drug and ready to start it slow.
Thanks.

Before you do this, is there a reason why you can't give your doctor print outs of the correct info so he can prescribe the correct medication compounded for you? This will prevent him from making the same mistake again for other patients too.

Water therapy is very good for CRPS. I find water at about 95 degrees Fahrenheit to be very comfortable for me. Then I can move my CRPS foot in it.

There is a great deal more PT that can and should be done, but you would need someone trained in it to work with you.

I am taking buprenorfin since 2004 (pain patch + sublingual pills for breakthrough pain). I wonder how this medication compares to the low-dose naltrexone.

Numb,

I was not given blocks, because the WC Doctor said they work best on early CRPS. I was not diagnosed until almost a year had passed, even though I had a classic presentation of the disease.

The LDN must be refrigerated and it is good for more than a month. Do not be wary of DIY LDN. It took me a month of trepidation before I mixed it and used it. When I look back I cannot believe I delayed. If you can measure you can do this.That video is what motivated me.

BTW, you do not have to shake the mixture everytime. Once it is mixed the LDN stays in suspension, the sediment is filler, which I prefer not to have in my LDN. Also I use a metric measuring cup to measure the water, much easier and faster than siphoning it out of that big bulky jug.

The therapy I have is 2x a week in a warm, salt water swimming pool. I am currently working out with hand weights which have made my workouts harder, but will hopefully help me gain strength and stamina. I still cannot tolerate the AC in the changing room, so I change in the sauna.

When I first went to PT and had to change clothing, I literally fell over with pain and exhaustion. Just carrying in a bag with a towel was too much. I couldn't open any of the doors either. I am much better, improving incrementally. If WC refuses to pay for more of this therapy I will fight them and I will join this facility at 100 a month, because I believe the water therapy is key to regaining full mobility and strength.

Becca,

Numb is lucky to get the 50mg pill. He will have total control of his dosage and will not suffer needless delays: between contacting his doctor and waiting on the pharmacy. And he will be 100% assured of full potency, which is not the case with compound pharmacies-compounding FYI is not FDA approved.

I agree with giving the Doctor information, but many doctors (if you can find an LDN doctor in the first place) do give patients the 50 mg pill to dilute themselves, to save on insurance costs.

Facebook has a great site called GotEndorphins with lots of active members posting about LDN. Many there mix LDN themselves. Also, it is a good place to do research.

My pain decreased significantly on LDN, but not near enough to allow me to stand on my RSD foot. Only when I got in the water did the pain lessen enough for me to put weight on my foot, which is why I believe that both modalities are needed to regain mobility. When I am in the water I am close to being pain free.

Plus it is the gift that, at least for me, keeps on giving. I had to go off LDN for several weeks for a surgical procedure and I have not needed to take pain meds at all. I do have pain, cramping and electrical surges, but at bearable levels.

My impression was he does not like to discuss medications on the phone. Perhaps I can try to call him. I will be on vacation starting this Thursday, out of state, so compound may not work for my situation right now.

Thanks for your sharing! What is sublingual pills for your breakthrough pain that you use. In addition, can you take iburprofin indefinitely or you just take it as needed.

Buprenophine is an opiod based medication and should not be taken with Low Dose Naltrexone (severe side effects may result).
From what I've read many people prefer to take LDN because it has few side effects and is not addictive like opiods and other meds. Often they've tried several other medications and encountered problems before trying LDN or they may not be able to take other medications due to interactions or intolerance.

Naltrexone (50mg) was originally developed as an anti addiction drug for opiods. (like Antabuse for alcohol) but was later found to be partially effective for pain relief, of some conditions, at low doses. It's also recommended that alcohol not be used concurrently with LDN. The links provided above contain useful information but as with all medications individuals can react differently (it's also useful to search subjects such as "LDN doesn't work"), as many of the sites trend towards being overly positive.

Here's a couple of other useful links:

https://www.ldnscience.org/

⭐Low-dose Naltrexone (LDN) Fact Sheet 215

I'd recommend reading as much information as possible before starting and depending on your conditions/symptoms to start low (1mg) and increase slowly (0.5mg or 1 mg every 2 weeks) - particularly if you have previously used opiods. Also recording doses, side effects, pain levels etc is useful to monitoring progress and efficacy.

Thanks for clarifying, bluesfan. I have been consistently fine where pain control is concerned since 2004, since taking Neurontin + buprenorfine (pain patch + breakthrough pills). So, if it ain't broke don't fix it, I guess.

I take ibuprofen when I get migraines, that's all, not for my CPRS. And the sublingual pills I am taking are only on the market in Belgium so that won't do you any good. :)

Blues fan,

The reason the sites are overwhelmingly positive is because LDN has been successful for a vast number of auto-immune based diseases, which afflict a large population of sufferers. These people are in general thrilled that LDN is not symptom control. Their bodies are being healed.

Unfortunately, as you probably know, LDN will not work for everyone. I am not entirely sure, but I recall it is about 20% who will not respond and this lack of response is genetically based. OPRM1 Asn4Asp predicts response to naltrexone treatment: a haplotype-based approach. - PubMed - NCBI.

At some point in time we will be medically treated based on individual DNA, not via the kitchen sink method.

It is also known that most of the compounded LDN varies significantly in potency, so it is suggested that if a person is not responding to compounded LDN after 6 months he/she should seek another provider. However, if you mixed it yourself and you don't respond after 6 months plus it is likely you are in the percentage, who won't respond. That said, there is another factor that can interfere with the efficacy of LDN: Candida, yeast.

I am adding the following link, because it lists all the possible reasons LDN may not work:
When LDN Is Not Working - Dudley's Low Dose Naltrexone Sites

Hi Biobased

I appreciate your enthusiasm for LDN - I wasn't criticizing the LDN sites for being positive but wanted to indicate that there is the possibility of side effects - some being severe - the discussion of which is not given sufficient weight on many of the sites promoting LDN. I had to do the alternative search "LDN doesn't work" before I found information to help another member of this site understand why her trial of LDN was causing an extremely painful reaction. (it wasn't candida)

I'm currently into week 12 of trialing LDN - (for assistance with pain relief from osteoarthritis). I'm unable to take regular pain relievers due to either allergy or interaction with medications I take for my primary condition - a potentially fatal auto-immune disease. Hence the reason it was essential that I obtain as much information as possible about likely interactions before starting. Unfortunately academically researched information for LDN is limited - there's none at all for using it with my auto-immune condition . . . so I'm being my own guinea-pig :D (with approval & monitoring from my doctors). I haven't posted about my experiences with LDN because as yet I don't have conclusive results (but it hasn't been all smooth sailing), and also because my situation and combination of conditions is uncommon I don't want to prejudice other people considering LDN.

Thanks for the link you provided on the genetic basis for Naltrexone not always working - it's not one I'd previously come across in my extensive search for information prior to starting LDN. Unfortunately I don't have access to such genetic testing in my country. Also do you know if the genetic influence would affect the efficacy of Naltrexone at low dose in the same manner to the full dose Naltrexone used in the study? My understanding is that naltrexone works in more than one way: as a nonselective opiod receptor antagonist (for opiod treatment) but it also works as an antagonist on non-opiod receptors (as an anti-inflammatory & analgesic ie: LDN). Is it possible the genetic influence may be limited to only one of the pathophysiological mechanisms? (Apologies for getting technical - still trying to get my head around some of this so I can explain to friends and family why I'm taking an expensive unapproved medication)

I'd also appreciate it if you could direct me to the sites that detail where people with auto-immune disease are being healed (rather than just having their symptoms controlled). Although I suspect LDN won't heal my auto-immune condition (I think of it as another management tool), I have other friends who may benefit from this information.

Yours remaining cautiously optimistic on LDN - bluesfan

Blues fan,

It's true I am enthusiastic about LDN,because without it I doubt I would be walking today and I would be taking a boatload of meds and supplements, moaning and crying, trapped on an inflatable bed in my den. I hope you ultimately have as much success with it as I have, but twelve weeks may not be long enough to determine if it is helping.

My husband is the person who ordered it for me and had more faith than I did, even though I was the one who researched it thoroughly. :D Frankly, I was terrified to use it.

The people on the Facebook site GotEndorphins are the ones who are detailing their positive experiences with LDN. And noting that they are improving, not just having pain relief. Many have written that their diseases are in remission, if not gone. I have yet to read about one person who has had a severe reaction to it, but I have read about users having vivid dreams and insomnia.

GOT ENDORPHINS? LDN (Low Dose Naltrexone) - Lookup-ID.com


By any chance in your research did you come across Joseph Wouk? Google LDN ! Part One - YouTube You might want to view his videos and hear his story if you haven't.

Have you researched magnesium and rutin? I took those supplements before LDN. In the past I took them for pain, but now I am going to take them for my overall health and arteries.

In regard to the genetic component-it applies to Naltrexone, full dose or low dose. It is an antagonist only. Low-dose naltrexone - Wikipedia, the free encyclopedia

If you don't mind me asking why is LDN expensive where you are? It is very affordable to order it online.

Thanks anyone for your input. I will try to mix it myself and will post my response after a month for your reference. I am at the airport going to Hawaii. My plan is beach day for a month. Let's see the water will help me to ease my pain flares.

Numb, have a great trip and enjoy the scenery. I think between LDN and the warm water you have a good shot at improvement.

Interested in finding a doctor that will prescribe it. I have lupus, RA, fibro and bulging disc. Will it help with the pain of the bulging disc because I read you can't take pain meds with it. Is that true?

I too am a fan of LDN. My combination of Gabapentin, Lyrica, Celebrex and LDN is working fairly well. It's not perfect, but what is??

My question would be wouldn't this medication "negate" all painkillers you are already taking, or would you have to stop taking those?

Because above poster is still using Neurontin/gabapentin, and the like.

I'm getting confused at this point, big time.

You need not be confused. Only opiate medications are contraindicated with LDN. Gabapentin, tramadol, lyrica, Celebrex are regularly taken without issue by LDN users.

Most LDN users are able to wean themselves off these other meds.

Have you tried weening off any of them? I found I only needed LDN when I was regularly going for PT in warm salt water, unfortunately since that was terminated by WC I have had multiple flares, which require me to take tramadol. I believe that short stints of drugs are vital to control the worse pain, but I fear that long term they negatively alter our bio-chemistry.

Because you take LDN you might be interested in the liver cleanse drink I make. It's delicious. Simply wash and chop a whole lemon into quarters or smaller. Add to a food processor,blender or vitamix, along with 2 tablespoons of olive oil and blend with four cups of filtered water. Drain through a sieve, into a glass jar. Store in the refrigerator. To drink: pour 4-6 oz into a glass, add some vanilla, stevia and ice cubes.

Thanks for posting your liver cleanse drink. After using lemon juice drinks after my ketamine treatments, my follow up blood tests finally started to come back normal. The lemon unfortunately started to aggravate my GERD so I switched to lots of broccoli and cauliflower which I read could aid in cleansing the liver. No problems after using them either.

Hi Numb. I've never tried it but have heard about it. My pm dr prescribes gabapentin and pain meds for me and they help manage my rsd pain a little better so I am sticking with them for now. But if they ever stop working I will ask my pm dr about LDN. If you try it I hope it helps.

I have stopped my LDN, due to unsurance issues, which I should have cleared up soon. I also switched to Wellbutrin from Lexapro. I am having a miserable time. Not sure if its the one or the other or both, but this bleeping bleeps!

This free-access review is a balanced summary of the potential risks and benefits of LDN treatment https://www.ncbi.nlm.nih.gov/pubmed/24526250.

I get mine on my own dime.Five months of 4.5mgs is 90 at Belmar in CO.

Hello,
I did not realize I have not returned to post my result for the LDN. I tried it for a few months but eventually stopped because It did not seem to make any difference on my pain. However, I have found soaking/swimming in the ocean helping with my PN and RSD pains tremendously. It is too bad I can't access to a salt water pool or warm ocean. I accidentally discovered this while I was vacationing in Hawaii. Try it if you can access to a salt pool or warm ocean.
Good luck and take care,
Numb

Numb,
It's unfortunate that you had no success with LDN, but may I ask if you switched compounders before you threw in the towel? I ask, because it is well documented by Dr. Bihari that patients often get no potency, low potency or slow release LDN. This is why he advocated DIY LDN. You cannot fully trust the compounded medications, they are not FDA approved.

Recently one CRPSer wrote on the LDN FB page that she had instant relief.

Others write it took a year. I am now grateful that no doctor would prescribe it for me originally, which forced me into DIY. What if I had gotten no potency LDN I might never have recovered? I am more leery than average, due to a previous compounding failure that cost me half my hearing in one ear.

I also wonder if some think they will lose their business if LDN proves to be too successful, so they purposefully compound less than effective LDN.

I wish all the LDN products that do not work could be checked for potency.

Posting to add this info: LDN may not work if you have candida, yeast.

Biobased,
I diluted it with the distilled water. I did not have the pharm to compound it since my doctor had prescribed it at 50 mg which was the standard size.
I wonder was it the problem that might have reduced the effectiveness.
Thanks.
Numb

You may be in the twenty percent group who due to genetics will have no response or you may need to double dose. Some take it twice a day. Some take as little as 1mg with relief and some also need to take up to 12 mgs. I had no idea that there were so many variables, until I joined the endorphins FB group. Also, there are many stories of people stopping LDN because they believe it isn't working and afterward they realize there were subtle improvements.

I wish you had luck, because it is so distressing to read that you did not, considering my success.

I was able to dance twice at my daughter's wedding, but I did suffer the entire night and two days afterward with a flare. But these flares from "over doing it" while painful, cannot compare to what I suffered with before LDN. I believe if I had gotten LDN earlier I might have had a full remission.