Low Dose Naltrexone and Neuropathy

@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

@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

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.

@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!

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

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

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!

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.

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

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.