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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@barbbielor

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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Could you describe your new heart problems while taking LDN, please? I am experiencing some “heart effects” as well. My doctors can’t agree whether the cause is the change in my thyroid medicine or the LDN. The only relief I have ever experienced for my PN pain and Fibro pain has been from the LDN. But, I do not want to continue taking it if it will damage my heart.

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Hi everyone. I have been on LDN now for two weeks. I have PN and Trigeminal Neuropathy. I am optimistic since I am able to wear the same shoes just about the entire day without switching to another pair to maintain some level of comfort. I feel it has reduced my PN pain so far but nothing for my TN. My pain doctor states it works on all neuropathic pain. His goal is to get me to 4mgs then it is available in a capsule form. I have had to go up very slowly on my dose, backing down and then going back up in a few days since I am so sensitive to medications. Good Luck everyone and please post how you are progressing once adding LDN to your medication regime.

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@inminn

Could you describe your new heart problems while taking LDN, please? I am experiencing some “heart effects” as well. My doctors can’t agree whether the cause is the change in my thyroid medicine or the LDN. The only relief I have ever experienced for my PN pain and Fibro pain has been from the LDN. But, I do not want to continue taking it if it will damage my heart.

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I have afib and that was recorded on my first try. Since then I have had svt and wide Q and supraventricular ectopic. It has cleared up after initial change in dosage. There is nothing else I can take for pain. My latest dosage of oxycodone 5 mg left me struggling with confusion, breathing problems, and nausea. For other pain not covered by LDN I use pain patches, lidocaine 5% by Endo, as well as lidocaine-prilocaine cream and my spinal cord stimulator. Also pain management doc does a great job at needed procedures. It's waiting on Workers Comp to approve that drags my pain out.

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Thank you for sharing your experience. About one year ago, with no prior issues, I began experiencing flutter and pause then hard slam to restart sensations as if my heart was defibrillating itself. My prescribing NP said LDN does not cause that. My GP said first that it’s my weight (can’t really exercise any more due to neuropathy and CFS/ME) and then she guessed it was my thyroid replacement dose being too high. The cardiologist I was sent to said I have a (suddenly ?) enlarged atrium, but did not offer any treatment or advice beyond that.
Thanks to your story, I’m going to have my LDN lowered and see if it helps at least.
Good luck to you, I hope they stop delaying your Worker’s Comp so you can get the help you need!

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@inminn

Thank you for sharing your experience. About one year ago, with no prior issues, I began experiencing flutter and pause then hard slam to restart sensations as if my heart was defibrillating itself. My prescribing NP said LDN does not cause that. My GP said first that it’s my weight (can’t really exercise any more due to neuropathy and CFS/ME) and then she guessed it was my thyroid replacement dose being too high. The cardiologist I was sent to said I have a (suddenly ?) enlarged atrium, but did not offer any treatment or advice beyond that.
Thanks to your story, I’m going to have my LDN lowered and see if it helps at least.
Good luck to you, I hope they stop delaying your Worker’s Comp so you can get the help you need!

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Glad to see someone else experiencing heart stuff only because my cardiologist was reluctant to blame LDN but since my pain management has agreed it is heart related after hearing from cardiologist. Some doctors are so reluctant to speak truth about medical issues. I do research a lot.

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@sassafras158

Hi everyone. I have been on LDN now for two weeks. I have PN and Trigeminal Neuropathy. I am optimistic since I am able to wear the same shoes just about the entire day without switching to another pair to maintain some level of comfort. I feel it has reduced my PN pain so far but nothing for my TN. My pain doctor states it works on all neuropathic pain. His goal is to get me to 4mgs then it is available in a capsule form. I have had to go up very slowly on my dose, backing down and then going back up in a few days since I am so sensitive to medications. Good Luck everyone and please post how you are progressing once adding LDN to your medication regime.

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I started on 1.5 mg of LDN and then went to 3 mg. Both were in capsule form. Just had to get them from a compounding pharmacy. I don’t think a regular pharmacy carries capsules less than 50 mg.

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Hi, Everyone,
I am trying to understand all the lingo going on here. Is Naltrexone the same as LDN? Is that Low Dose Naltrexone? I have some medical background (I am a retired Med Tech), but I'm fairly new to this blog. It would be very helpful, to me anyway, and possibly to others, if you use full words instead of abbreviations, and explain what the meds you are taking are supposed to do.
With great appreciation for all of your efforts and info,
Andie

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@justandie

Hi, Everyone,
I am trying to understand all the lingo going on here. Is Naltrexone the same as LDN? Is that Low Dose Naltrexone? I have some medical background (I am a retired Med Tech), but I'm fairly new to this blog. It would be very helpful, to me anyway, and possibly to others, if you use full words instead of abbreviations, and explain what the meds you are taking are supposed to do.
With great appreciation for all of your efforts and info,
Andie

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I understand your frustration.
Naltrexone is used for alcohol and other addictions. It is generally dosed at 50mg 4x daily. In that dose it works as an opioid antagonist. It seems ironic that in small doses it may block pain, which is what opioids do. It is a prescription drug.
LDN stands for low dose Naltrexone, the same drug used in very small doses. There have been some studies claiming that LDN can relieve some of the pain of peripheral neuropathy (PN).
In order to obtain LDN, one usually has to go to a compounding pharmacy, who will make it specially for you. This is expensive and inconvenient.
I tried it myself. I used 2 50 mg tablets, crushed them and dissolved them in 100 cc of water, making a solution of 100mg to 100 cc of water, or 1mg to 1 cc. I purchased a pipette (cheap, and reasonable if it works and you'll use it for a long time), and drew up 4.5 cc (4.5 mg) and squirted it into a glass of water, which I drank daily. It didn't work for me.
My pain doc told me that sometimes less or more will work. I didn't bother with trying different dosages.
Hope it works fo you.

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Thank you for the information. I really appreciate it. Doesn't sound like a path I want to take.
Best!

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I use low dose naltrexone. It works for me. I started at 1.5 mg and have very slowly worked my way to 4 mg. I am allergic or suffer severe reactions to many meds. This is working for my CRPS and SFN. - Complex Regional Pain Syndrome and Small Fiber Neuropathy.

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