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

@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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@jesfactsmon Hi again, Hank! I used the low dose Naltexone for about 2 months. It is written that it should be used at least this amount of time for it to work. It does not always work at the beginning. My experience with it seemed promising for about 1 month. My pain seemed to lesson, and I put off my DRG trial. However, after the first month, it just stopped working. I took it for at least a month more, and pain was severe the whole time. There is good research on it, but only about 25 to 40% of people trying it, reap benefits. It is certainly worth a try!!!! Especially if you see Linda is interested! Love to you both, Lori

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@lorirenee1

@jesfactsmon Hi again, Hank! I used the low dose Naltexone for about 2 months. It is written that it should be used at least this amount of time for it to work. It does not always work at the beginning. My experience with it seemed promising for about 1 month. My pain seemed to lesson, and I put off my DRG trial. However, after the first month, it just stopped working. I took it for at least a month more, and pain was severe the whole time. There is good research on it, but only about 25 to 40% of people trying it, reap benefits. It is certainly worth a try!!!! Especially if you see Linda is interested! Love to you both, Lori

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@lorirenee1 @rwinney Yes I think its worth a try as well. The downside seems low for most people. The thing that sounds like the biggest possible stumbling block is that apparently many people have some bad effects early on. Some have candida albicans overgrowth, which is a problem Linda has dealt with in the past. Also potentials for sleep issues and even headaches, which she has already had problems with the past few months. The key it sounds like is to stick with it through the early side effects as they usually subside. Linda has dealt with fibromyalgia since about 1990 and I am reading that about 60% of FM sufferers actually see benefits. That would be amazing for her if it improved. She and I need to discuss this further before contacting her PCP, but I think it seems worth a shot.

Thanks for your feedback Lori and Rachel. If you have any further thoughts, send them along, always appreciated! That goes for anyone else reading this as well. Would love your feedback regarding personal experiences with LDN. Thanks, Hank

Liked by lorirenee1, rwinney

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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 been taking LDN for nearly four months. I have a condition known as Parsonage Turner syndrome which causes severe nerve pain in both hands and my right forearm. I began with 0.5 mg of LDN and have slowly increased it to 2.5 mg. So far it hasn’t helped me. I plan to keep working my way up to at least 4.5 mg to see if I will find an effective dose. I make my own LDN from a 50 mg tablet so it is very inexpensive to use and it gives me flexibility when changing doses.

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@patrick17

I have been taking LDN for nearly four months. I have a condition known as Parsonage Turner syndrome which causes severe nerve pain in both hands and my right forearm. I began with 0.5 mg of LDN and have slowly increased it to 2.5 mg. So far it hasn’t helped me. I plan to keep working my way up to at least 4.5 mg to see if I will find an effective dose. I make my own LDN from a 50 mg tablet so it is very inexpensive to use and it gives me flexibility when changing doses.

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@patrick17 Thank you for sharing! It would be great if you would continue to check in every once in a while with an update on progress or no progress. My pain management was starting me at 1.5 but, my neurologist claimed he would jump me right to 4.5 for starters. I'm not too clear on starting at the highest does. Regardless, I have yet to try either but, always interested in others experiences. Perhaps once I'm off opiods I will try. Thanks again and good luck!

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@patrick17

I have been taking LDN for nearly four months. I have a condition known as Parsonage Turner syndrome which causes severe nerve pain in both hands and my right forearm. I began with 0.5 mg of LDN and have slowly increased it to 2.5 mg. So far it hasn’t helped me. I plan to keep working my way up to at least 4.5 mg to see if I will find an effective dose. I make my own LDN from a 50 mg tablet so it is very inexpensive to use and it gives me flexibility when changing doses.

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Hi Patrick, I am very interested in your progress as well. I'm also wondering how you manage to formulate .5mg doses from a 50 mg pill. Can you say a bit about your method? Thanks, Hank

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@jesfactsmon

Hi Patrick, I am very interested in your progress as well. I'm also wondering how you manage to formulate .5mg doses from a 50 mg pill. Can you say a bit about your method? Thanks, Hank

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Hi I'm Shelley I'm on 600 milligrams of Gabapentin twice a day and it's not working for my neuropathy and is getting harder and harder to walk

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@jesfactsmon

Hi Patrick, I am very interested in your progress as well. I'm also wondering how you manage to formulate .5mg doses from a 50 mg pill. Can you say a bit about your method? Thanks, Hank

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Hi Hank, my doctor told me about making LDN from a 50 mg naltrexone tablet and then I looked it up on the internet for more details. Measure out 50 milliliters of DISTILLED water and pour it into a small bottle. I use a small brown bottle that a nerve supplement I used to take came in. You also need a bottle cap that you can insert a syringe into. I use a 1 milliliter syringe, but a 5 milliliter one might be better for larger doses. Once the distilled water is in the bottle put in a 50 mg tablet of naltrexone. Place the bottle in the refrigerator. From what I read it takes 2 hours for the tablet to fully dissolve. Once dissolved the full bottle contains 50 mg of naltrexone in 50 milliliters. Therefore, 1 ml equals 1 mg of naltrexone. The bottle must be kept in the refrigerator at all times. You must also shake the bottle well before you take each dose. I believe everything I just stated is accurate, but it’s best to look this up if you want to make LDN yourself. Your doctor will advise you concerning this as well. Good luck!

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@patrick17

Hi Hank, my doctor told me about making LDN from a 50 mg naltrexone tablet and then I looked it up on the internet for more details. Measure out 50 milliliters of DISTILLED water and pour it into a small bottle. I use a small brown bottle that a nerve supplement I used to take came in. You also need a bottle cap that you can insert a syringe into. I use a 1 milliliter syringe, but a 5 milliliter one might be better for larger doses. Once the distilled water is in the bottle put in a 50 mg tablet of naltrexone. Place the bottle in the refrigerator. From what I read it takes 2 hours for the tablet to fully dissolve. Once dissolved the full bottle contains 50 mg of naltrexone in 50 milliliters. Therefore, 1 ml equals 1 mg of naltrexone. The bottle must be kept in the refrigerator at all times. You must also shake the bottle well before you take each dose. I believe everything I just stated is accurate, but it’s best to look this up if you want to make LDN yourself. Your doctor will advise you concerning this as well. Good luck!

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Very interesting info. Boy, wouldn't that be nice to cut out all the messing around with compounding pharmacies. Will look into it. Thank-you Patrick.

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@shelda69

Hi I'm Shelley I'm on 600 milligrams of Gabapentin twice a day and it's not working for my neuropathy and is getting harder and harder to walk

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Hi Shelley, my wife has PN in her feet and now starting up her legs a bit. She had a not so fun time with gabapentin about 2 years ago. I can't remember all of her symptoms but I know she had dizziness and fuzzy thinking, hallucinations at night as well as trouble sleeping. It had a number of negative effects with zero benefits. She weaned off that and so far has not tried any other drugs. She has burning in her feet to about an 7-8 level on perhaps 3 out of 4 days on average with a relief day at about a level 4 the other day. She does not leave home at all any more unless she has a doctor appt. or something else that requires her to leave, so she keeps her feet uncovered all day with a fan blowing on them day and night. She smokes cannabis about 2-3 times per week for some relief, usually 3-4 hours before bedtime, which helps her get to sleep. It looks like she is going to try low dose naltrexone next.

How does your neuropathy manifest? You say its getting harder to walk, so its in your legs mostly? Can you describe your pain and/or other bad effects of your neuropathy? Are your problems walking related to numbness? Just looking to get a bead on your particular issues as, although there are usually some similarities among PM sufferers, there are always some unique characteristics. Often you can get some helpful ideas from people on Connect if you can share a bit more about what you are going through in a little more depth.
Hope you can find some thing that helps you. Best, Hank

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@rwinney

@patrick17 Thank you for sharing! It would be great if you would continue to check in every once in a while with an update on progress or no progress. My pain management was starting me at 1.5 but, my neurologist claimed he would jump me right to 4.5 for starters. I'm not too clear on starting at the highest does. Regardless, I have yet to try either but, always interested in others experiences. Perhaps once I'm off opiods I will try. Thanks again and good luck!

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I will update from time to time my experience with low dose naltrexone. I have read that some doctors start their patients with 1.5 mg and increase it by 1.5 mg every two weeks until they reach 4.5 mg. Starting at 4.5mg is unusual, I think. I have read that you should “start low and go slow.” People who do this often start at 0.5 mg.

When I was on an opiate my doctor prescribed ultra low dose naltrexone (ULDN). That was okay to take with an opiate. I think that was unnecessary since the dose was so low, between 1 and 10 micrograms. I don’t know how that would have helped me. It was supposed to enhance the effect of the opiate, but I didn’t experience it. Once I was off the opiate I began taking LDN.

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I took LDN in a topical cream prepared by a compounding pharmacy. It caused a nasty rash that has taken weeks to improve. I'm still applying cortisone-10 4 x /day 3 weeks after the rash broke out and it has slowly improved. I suppose this means that taking LDN pill is out of the question – could have an anaphylactic reaction? Anyone have experience with this? Thanks.

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I tried a topical LDN cream prepared by a compounding pharmacy and broke out in a nasty rash. Three weeks later, I'm still applying Cortizone10 to my feet, and it is slowly helping the rash. So now, I guess trying LDN in a pill is out of the question – might cause ananaphylactic reaction? Anyone have experience with this?

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I’m following up on my previous post from July 19th. At that time I was taking 2.5 mg of low dose naltrexone and it hadn’t helped for my nerve pain. I have worked my way up to 4 mg a day and it still hasn’t helped. I’ve been taking LDN for 5 months now after starting with 0.5 mg. I’ll probably go up to 5 mg and if it still hasn’t helped I’ll stop taking it. I wish I had better news to share, but perhaps 4.5 mg or 5 mg will be the magic number.

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@patrick17

I’m following up on my previous post from July 19th. At that time I was taking 2.5 mg of low dose naltrexone and it hadn’t helped for my nerve pain. I have worked my way up to 4 mg a day and it still hasn’t helped. I’ve been taking LDN for 5 months now after starting with 0.5 mg. I’ll probably go up to 5 mg and if it still hasn’t helped I’ll stop taking it. I wish I had better news to share, but perhaps 4.5 mg or 5 mg will be the magic number.

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@patrick17 Thank you for sharing your experience with LDN. As it sits in my cabinet, I've never actually tried it. Twice now I've been so desperate for something else to help that I considered it, which is why I filled the prescription. Unfortunately, I don't believe that it will help me as I'm already on opiates and not coming off anytime soon. It's discouraging when you hope for something to work and it doesn't. However, the fact that you attempted says a lot and now you can check that one off the list. Perhaps going to 5 will do the trick but if it doesn't thank you so much for being someone who experimented and gave us results. I wish you the best going forward with whatever you find works for you. We must keep trying even when we get exhausted from doing so.
Best to you,
Rachel

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@rwinney

@patrick17 Thank you for sharing your experience with LDN. As it sits in my cabinet, I've never actually tried it. Twice now I've been so desperate for something else to help that I considered it, which is why I filled the prescription. Unfortunately, I don't believe that it will help me as I'm already on opiates and not coming off anytime soon. It's discouraging when you hope for something to work and it doesn't. However, the fact that you attempted says a lot and now you can check that one off the list. Perhaps going to 5 will do the trick but if it doesn't thank you so much for being someone who experimented and gave us results. I wish you the best going forward with whatever you find works for you. We must keep trying even when we get exhausted from doing so.
Best to you,
Rachel

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@rwinney @patrick17 Hi Guys, we received an order from a pharmacy in NJ about 2 months ago and it too has been "just sitting" on a counter. Linda is a good candidate as she takes no opiates whatsoever. But on any given night she worries so much about getting to sleep that she is afraid it might affect it negatively. I believe her plan is to wait until the weather cools down to start it, as she feels she sleeps better when it's not hot out. I too want to express my thanks to you Patrick, for thinking to update us on your status. Sorry to hear it hasn't helped so far. Wishing for it to start to work at the 5mg dose. Best, Hank

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