Low Dose Naltrexone and Neuropathy

Posted by lorirenee1 @lorirenee1, Jan 6 1:16pm

Hi everyone. Lori Renee here. I have been on Low Dose Naltrexone for about 2 weeks. It may be too soon to post about this medication, but I thought I would post now, and post again, in about 2-4 weeks. Bottom line is that Low Dose Naltrexone has helped considerably with my foot neuropathy. My pain is sometime gone, and usually only reaches a level 5 or so, sometimes. Usually, it is about a 2-3, kind on a low level foot throbbing. Enough to be annoying, but not enough to want to cut my feet off. Without it, I wanted to cut my feet off. Certain problems do remain, so my feet are far from normal still. I put on shoes, and feel like my socks are bunched up, or that there are pebbles in them. It takes me a long time to find a shoe to wear. The balls of my feet still feet like they have been stuck in cement, but not all the time. My toes still feel stuck together, or too widely spread. All crazy sensations of neuropathy. So Low Dose Naltrexone has not taken all the crazies away. However, the pain is so much lower, that I am amazed. I have only used Kratom once in two weeks, which is remarkable. I have no side effects at all from the drug. It is not covered by my Medicare insurance, but is about 35 bucks a month. Not too bad. Anyway, it really is the best pain killer I have tried, other than Kratom. I don't have to taste the vile Kratom, so that is very good. I suggest that everyone give it a try. I read that it helps approximately 25% to 40% of people that try it. The endorphin rush it produces is loaded with pain fighters. Yes, give it a try. I will post again about it, as I use it more. Love to all, Lori Renee

@lorirenee1

@jeffrapp Hi Jeff, The 50 mg pill is the regular Naltrexone. It is not the Low Dose Naltrexone. That is not the right pill. You must find a pharmacy that will make this Low Dose Naltrexone, 4.5 mg. pill for you. Furthermore, you generally start out at about 3.0 mg., and have to work up to 4.5 mg. after 3 days. It is called a "compounding pharmacy" that you have to find. The pharmacist, literally, makes the LDN special order, just for you. You cannot just cut up the 50 mg. regular Naltrexone pills. You will not get the dosage right. Good luck, and give it a try. Lori

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Thanks

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@terrydclaar

Not sure how to access private messages. Can you help me, thanks, Terry

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@terrydclaar click the small envelope at the top of the screen next to your profile icon.

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@johnbishop

@terrydclaar click the small envelope at the top of the screen next to your profile icon.

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Thanks for your help, John.

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I found this informative write up on LDN. It clarifies alot in simple language.
https://www.amymyersmd.com/2017/05/low-dose-naltrexone/

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I take the 50mg pill crush it and add 50ml of distilled water (letting it sit for an hour then shake before use) to it then draw up the dosage with a measured food/child's med syringe and add that to juice. 1ml = 1mg etc. I refrigerate it. There are lots of people doing this and plenty of how to videos on YT.

The one time cost was about $40 to buy the things needed to do this right and my copay for 90 50mg naltrexone tablets is $10. That's a 1,000 day supply of ldn or more depending on your optimal dose but the use by date is only good for a year so realistically its a 365 day supply which would be for me $240 at the compounding pharmacy.

This way it's easy to change the dose to get what's right for you. A lot cheaper than going through a compound pharmacy. All they do is crush a larger naltrexone pill and fill gel caps with a lower amount maybe add filler. I looked at going to a local compounding pharmacy and it was $60 for 90 days. Honestly it wasn't the cost so much as having the flexibility to change the dose starting low and moving higher then down again if that's what works.

There is another version of naltrexone called dextro-naltrexone that is being researched and that does not block opioid receptors so larger doses would be possible.

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@offthegrid

I take the 50mg pill crush it and add 50ml of distilled water (letting it sit for an hour then shake before use) to it then draw up the dosage with a measured food/child's med syringe and add that to juice. 1ml = 1mg etc. I refrigerate it. There are lots of people doing this and plenty of how to videos on YT.

The one time cost was about $40 to buy the things needed to do this right and my copay for 90 50mg naltrexone tablets is $10. That's a 1,000 day supply of ldn or more depending on your optimal dose but the use by date is only good for a year so realistically its a 365 day supply which would be for me $240 at the compounding pharmacy.

This way it's easy to change the dose to get what's right for you. A lot cheaper than going through a compound pharmacy. All they do is crush a larger naltrexone pill and fill gel caps with a lower amount maybe add filler. I looked at going to a local compounding pharmacy and it was $60 for 90 days. Honestly it wasn't the cost so much as having the flexibility to change the dose starting low and moving higher then down again if that's what works.

There is another version of naltrexone called dextro-naltrexone that is being researched and that does not block opioid receptors so larger doses would be possible.

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Hello @offthegrid, Welcome to Connect! Thank you for sharing that tip which definitely saves a lot of money. Did you run it by your doctor or pharmacist or just do it on your own?

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@johnbishop

Hello @offthegrid, Welcome to Connect! Thank you for sharing that tip which definitely saves a lot of money. Did you run it by your doctor or pharmacist or just do it on your own?

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I have the script from my Doctor for naltrexone 50mg through my mail order pharmacy. I called the compound pharmacy and they said the script would have to go through them and told me the $60/90 day cost. So I already had the naltrexone through mail order and just did some research on it – I'd read people were 'making' their own doses which is pretty easy.

During my next PCP visit I'll bring it all in to her office and demonstrate what I'm doing. I doubt she'll disapprove. She's knew about LDN when I brought it up.

I've got some other meds which I get prescribed at a higher dose and cut the pills in half or quarters (unless they're time release there's no issue with that). Making it into a solution is a much more accurate way of judging the dose.

Hopefully it helps my arthritis in the long term.

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@offthegrid

I have the script from my Doctor for naltrexone 50mg through my mail order pharmacy. I called the compound pharmacy and they said the script would have to go through them and told me the $60/90 day cost. So I already had the naltrexone through mail order and just did some research on it – I'd read people were 'making' their own doses which is pretty easy.

During my next PCP visit I'll bring it all in to her office and demonstrate what I'm doing. I doubt she'll disapprove. She's knew about LDN when I brought it up.

I've got some other meds which I get prescribed at a higher dose and cut the pills in half or quarters (unless they're time release there's no issue with that). Making it into a solution is a much more accurate way of judging the dose.

Hopefully it helps my arthritis in the long term.

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@offthegrid Do you know if Medicare covers ldn?

I read in research studies that it shouldn't be used by people who are using opioids or narcotics for relief from chronic pain. If one were to take it, it should be with the understanding that they would stop taking opioids quite soon. I don't think I'm ready to do that right now. My primary pain is small fiber peripheral polyneuropathy pain that began in the balls of my feet and is progressing up my legs.

Regarding the use of marijuana products at the same time as opioids – if I were to take marijuana, my pcp would stop prescribing pain meds.

Jim

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@jimhd

@offthegrid Do you know if Medicare covers ldn?

I read in research studies that it shouldn't be used by people who are using opioids or narcotics for relief from chronic pain. If one were to take it, it should be with the understanding that they would stop taking opioids quite soon. I don't think I'm ready to do that right now. My primary pain is small fiber peripheral polyneuropathy pain that began in the balls of my feet and is progressing up my legs.

Regarding the use of marijuana products at the same time as opioids – if I were to take marijuana, my pcp would stop prescribing pain meds.

Jim

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@jimhd I've been told LDN is only out of pocket which is how I had to pay.

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@jimhd

@offthegrid Do you know if Medicare covers ldn?

I read in research studies that it shouldn't be used by people who are using opioids or narcotics for relief from chronic pain. If one were to take it, it should be with the understanding that they would stop taking opioids quite soon. I don't think I'm ready to do that right now. My primary pain is small fiber peripheral polyneuropathy pain that began in the balls of my feet and is progressing up my legs.

Regarding the use of marijuana products at the same time as opioids – if I were to take marijuana, my pcp would stop prescribing pain meds.

Jim

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Medicare covers naltrexone so if you make your own LDN from that yes it covers it. It won't cover a script for LDN itself. Technically to the FDA – LDN doesn't even exist.

When someone takes LDN the opioid receptors used by an opiate based drug will be blocked for some period of time. I usually see 3-5 hours after taking it quoted as a time. During that time period I believe someone using opiates would go into withdrawals so yes I don't think that's recommended.

I have neuropathy in my feet and in my right leg headed up to my calf. They say its from diabetes but I always get a look when I tell my doc its above my ankle now. Other doctors always ask me how my doctor knows its from diabetes – I think that's been assumed but I'm wondering if I have the same thing as you. How did they diagnose that? – thanks

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@offthegrid

Medicare covers naltrexone so if you make your own LDN from that yes it covers it. It won't cover a script for LDN itself. Technically to the FDA – LDN doesn't even exist.

When someone takes LDN the opioid receptors used by an opiate based drug will be blocked for some period of time. I usually see 3-5 hours after taking it quoted as a time. During that time period I believe someone using opiates would go into withdrawals so yes I don't think that's recommended.

I have neuropathy in my feet and in my right leg headed up to my calf. They say its from diabetes but I always get a look when I tell my doc its above my ankle now. Other doctors always ask me how my doctor knows its from diabetes – I think that's been assumed but I'm wondering if I have the same thing as you. How did they diagnose that? – thanks

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Hi @offthegrid
Can you please refer us to a study that substantiates your statement above about LDN and opiate withdrawl? I can't find one myself.
In fact, I have found several papers which conclude the opposite. Here's one:
https://www.sciencedirect.com/science/article/abs/pii/S0006322304005943
In this short study (there are others) they conclude that LDN can reduce the symptoms of withdrawal.
Remember, the dose of naltrexone in LDN is very small (up to 4.5 mg daily) compared to it's use for opioid addiction (50 mg three times daily). It's difficult for me to imagine that the small dose can occupy all the opioid receptors, but, surprisingly, I have been wrong before.
Looking forward to your reply.
Stay well
Jeff

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@jeffrapp

Hi @offthegrid
Can you please refer us to a study that substantiates your statement above about LDN and opiate withdrawl? I can't find one myself.
In fact, I have found several papers which conclude the opposite. Here's one:
https://www.sciencedirect.com/science/article/abs/pii/S0006322304005943
In this short study (there are others) they conclude that LDN can reduce the symptoms of withdrawal.
Remember, the dose of naltrexone in LDN is very small (up to 4.5 mg daily) compared to it's use for opioid addiction (50 mg three times daily). It's difficult for me to imagine that the small dose can occupy all the opioid receptors, but, surprisingly, I have been wrong before.
Looking forward to your reply.
Stay well
Jeff

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I was asked whether someone should be regularly taking an opiate painkiller at the same time they take LDN and no one is going to recommend that. The study you cited doesn't deal with that either it deals with straight withdrawal vs reduced withdrawal w/LDN.

You would go through a short period of 'reduced' withdrawal every day if you were simultaneously using an opiate as a painkiller. No one would want to live like that.

LDN does what it does by blocking opioid receptors temporarily making the body believe that it needs to create more endorphins, create more opioid receptors to capture more endorphins, and make the opioid receptors more sensitive also to capture more endorphins. This is referred to as the rebound effect. It tricks the body by blocking opioid receptors.

It's not in dispute that the low dose blocks opioid receptors for what is commonly stated to be 3-5 hours after taking a dose though ldn also takes 1-2 hours to begin doing its job. I've never seen anywhere state that it only blocks 'some' receptors but maybe that is the case. However it has to block enough of them for long enough to trick the body into acting. This is likely part of the reason why the optimum dose is different for everyone.

I've seen LDN described at as high a dose as 10mg also and that the 'rebound effect' can be from 1-5 days. I wish more research was done into this.

Liked by HankB

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I’m not sure if anyone posted this website about low dose naltrexone, but it has a wealth of information about it. I thought it would be helpful to anyone considering trying LDN.
https://ldnresearchtrust.org/

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Hi @lorirenee1 @rwinney @offthegrid @jeffrapp @patrick17 and anyone else who has experience with LDN. I just noticed this discussion (which began in January before I knew how to maneuver about on Connect) this morning; apparently some new thoughts got posted recently which is why it popped up high enough on the list for me to notice. I had not heard of LDN before and having done a fair amount of research about it today I must say it sounds very promising as an aid to boosting the immune system and healing overall inflammation and a help to fibromyalgia, at very low risk as far as side effects. Even my wife is intrigued, no small thing in and of itself. She usually discounts every new (not new really, but new to us) thing that comes along, a world class skeptic. Okay, my question is, have any of you or has anyone you know, felt long lasting benefits from taking LDN? I am about to start the process of obtaining some (getting the prescription, finding the right compounding pharmacy, etc.) but just want a final sanity check from another person who can give a personal testimonial of sorts that they swear by it. Thanks in advance for your help guys. Hank

PS: if want to see a cute and funny (sweet) testimonial about LDN, go to the 13:48 mark in this video; Sarah talks for about 10 minutes max. The rest of the one hour video is only so-so I think:

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@jesfactsmon

Hi @lorirenee1 @rwinney @offthegrid @jeffrapp @patrick17 and anyone else who has experience with LDN. I just noticed this discussion (which began in January before I knew how to maneuver about on Connect) this morning; apparently some new thoughts got posted recently which is why it popped up high enough on the list for me to notice. I had not heard of LDN before and having done a fair amount of research about it today I must say it sounds very promising as an aid to boosting the immune system and healing overall inflammation and a help to fibromyalgia, at very low risk as far as side effects. Even my wife is intrigued, no small thing in and of itself. She usually discounts every new (not new really, but new to us) thing that comes along, a world class skeptic. Okay, my question is, have any of you or has anyone you know, felt long lasting benefits from taking LDN? I am about to start the process of obtaining some (getting the prescription, finding the right compounding pharmacy, etc.) but just want a final sanity check from another person who can give a personal testimonial of sorts that they swear by it. Thanks in advance for your help guys. Hank

PS: if want to see a cute and funny (sweet) testimonial about LDN, go to the 13:48 mark in this video; Sarah talks for about 10 minutes max. The rest of the one hour video is only so-so I think:

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I have never used it, but filled the script written by Pain Management on two different occasions. I was desperate for pain relief and my PM Drs suggested I try it. Plus they disagreed with opiod use. Insurance would not cover because it's off label, non FDA approved. I had it compounded at my local compounding pharmacy. It cost about $50 each time out of pocket. It is not supposed to be used with opiods but I learned from the pharmacist that it can be used in conjunction but, the opiod must be spaced 6 hours apart from LDN at night. My pain never allowed this spacing and I felt I was too far gone to get anything out of it. Linda on the other hand does not take opiods so I'd say give it a try. She may be able to benefit from her body creating it's own natural opiods with help from LDN. Lori gave it a try but not sure her final outcome.

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