Low Dose Naltrexone and Neuropathy

Posted by lorirenee1 @lorirenee1, Jan 6, 2020

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

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@rawbar533

I've read several articles regarding LDN's effectiveness with neuropathy pain relief. Does anyone have experience trying LDN, or additional information?

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Welcome @rawbar533, I think you'll appreciate the comments and experiences in this related discussion:
- Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/

What's your experience with neuropathy? Have you been living with it for long? What helps you?

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@colleenyoung

Welcome @rawbar533, I think you'll appreciate the comments and experiences in this related discussion:
- Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/

What's your experience with neuropathy? Have you been living with it for long? What helps you?

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I'm pretty new to it. Only a couple of months, so I'm still in the stages of getting emg, mri, pills thrown at me. There doesn't seem to be much help available from the doctors so far. Mine is in my fingers, hand and arm (right arm) . I've lost function of my thumb and index finger, so I'm pretty much one handed at this point. 24/7 burning and numbness. Muscle loss as well. Most recently I've been referred to a hand specialist. So I'm awaiting that appointment.

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@rawbar533

I've read several articles regarding LDN's effectiveness with neuropathy pain relief. Does anyone have experience trying LDN, or additional information?

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I have been using it for about 6 weeks. So far, I can't really say it's helped. Evaluating how effective any treatment is for PN has been a problem for me, and others. The effect, if any, is not usually obvious. Furthermore, there are so many other variables (mood, weather, other meds, on and on) that it is nearly impossible to tell, unless the effect "knocked my socks off" which so far, hasn't happened.
Regarding LDN specifically, I have solved the problem of it being expensive when bought through a compounding pharmacy. I get 50 mg tablets, crush and dissolve 2 (100 mg) in 100 cc of water, thus making a 1 mg to 1cc solution. Then, using an inexpensive pipette I bought, I put 4.5 cc in a small glass of water and drink it.
My pain medicine doc told me it may take 6 weeks or so to see an effect. Also, it is somewhat dose dependent, and he finds that if anything, sometimes a smaller dose is more effective. That may explain the 3 mg dose mentioned above.
Anyway, it's not helping me in any meaningful way, so I'm about to give up. I hope others have better results.

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I take 3 mg LDN once a day at bedtime. I believe it has helped as I have less pain now. I would agree that it is sometimes hard to tell what is helping. It is expensive. The one side effect for me is vivid dreams that are weird.

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@daj3333

I take 3 mg LDN once a day at bedtime. I believe it has helped as I have less pain now. I would agree that it is sometimes hard to tell what is helping. It is expensive. The one side effect for me is vivid dreams that are weird.

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How would you rate your pain now vs pre LDN? Rate by percentage or 1-10 scale, Whichever you prefer, if you don't mind me asking. Thank you.

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Overall I would estimate 50%. Some days are still better than others but worst days aren’t as bad and good days are better than before.

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I have CRPS and SFN in both feet and legs. I have been slowly ramping my way to 4.5 MG of LDN. Having many drug allergies I am limited to pain relievers. So far this has reduced chronic pain from the 2 things mentioned above.

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@barbbielor

I have CRPS and SFN in both feet and legs. I have been slowly ramping my way to 4.5 MG of LDN. Having many drug allergies I am limited to pain relievers. So far this has reduced chronic pain from the 2 things mentioned above.

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Hello @barbbielor. I moved your discussion and combined it with an existing discussion titled, "Low does naltrexone and neuropathy" - https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/ so you could meet the many members discussing this topic.

@daj3333, @rawbar533, and @solobeee1, have recently mentioned low dose naltrexone in this discussion and may have more to share. @barbbielor, it is great to hear you are getting some relief. Have you experienced and side effects?

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@daj3333

I take 3 mg LDN once a day at bedtime. I believe it has helped as I have less pain now. I would agree that it is sometimes hard to tell what is helping. It is expensive. The one side effect for me is vivid dreams that are weird.

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If it helps, I found that when I started taking my dose in the morning, I didn’t have that side effect. I also agree it’s hard to tell what’s working or not. For me, it doesn’t appear to help as much with my pain, but noticeably improved my fatigue.

My doctor referred me to CareFirst Specialty Pharmacy in New Jersey (I live in Illinois and they do mail order), which we found seems to have much better prices than where I live.

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@JustinMcClanahan

Hello @barbbielor. I moved your discussion and combined it with an existing discussion titled, "Low does naltrexone and neuropathy" - https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/ so you could meet the many members discussing this topic.

@daj3333, @rawbar533, and @solobeee1, have recently mentioned low dose naltrexone in this discussion and may have more to share. @barbbielor, it is great to hear you are getting some relief. Have you experienced and side effects?

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I have had heart issues each time I increase the dose. As I continue on that level the heart issues decrease. That's why I am hoping that by taking three weeks before I increase this next time might eradicate heart problems.

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