Low Dose Naltrexone

Posted by Suz @db72, Jul 19 11:34am

Hello. I’ve been on Low Dose Naltrexone (3 mg) for 10 years that was originally prescribed for my arthritis, ME/CFS (Chronic Fatigue Syndrome), and fibromyalgia which I’ve been disabled with for 39 years. But, I also have severe axonal large fiber Polyneuropathy (plus autonomic PN) which has progressed over the past decade to where I use a motorized chair when I go places. I am 73 and housebound due to both the ME/CFS and PN. I have fallen badly several times.

That said, I have not needed additional pain medication though my neurologist prescribed gabapentin, which I refused for fear of side effects and habituation.

My pain is very odd in that my parathesias are strong vibrating sensations in my legs that often wake me up at night. Breathing exercises lessens them. Walking is very difficult because my legs feel like lead weights, I trip often, and my balance is awful. I also get sharp stabbing pains sometimes throughout my body along with other assorted irritating sensations, but overall the pain part of it is nothing I can’t handle so far.

I know that LDN has helped many people with neuropathy and that it is used with great success for many other types of pain syndromes. I have tried twice to go off it (it is not addicting) and both times my back and muscle pain returned within a few days. I know LDN doesn’t work for everyone but it’s been a godsend for me.

I don’t know if my neuropathy would become unbearable were I to go off LDN, but I don’t want to find out as I cannot tolerate the side effects from other drugs.

So, I just wanted to share my story in case anyone here is in search of a safe alternative medication that has basically no side effects and isn’t too expensive. (about $30 a month from the compounding pharmacy). For more info the LDN Research Trust website has lots of info for both patients and prescribers.

Oh and btw, LDN also helps with mood which is extremely challenging having both ME/CFS and PN, and I’ve been able to steer clear of antidepressants.

Interested in more discussions like this? Go to the Neuropathy Support Group.

Profile picture for moorethrpy @moorethrpy

@dbchip keep asking. I am not really surprised your docs are resistant as others including myself were turned down. It is fairly benign as to side effects. As I said, it was my Columbia U doc in NY who knew about it and prescribed. Another option is onlne. Dr.saleeeby@carolinaholisticemedicine.com. He is in Mt. Pleasant, SC but I did communicate with him online and he said he writes a lot of prescriptions for LDN. Good luck. And remember you need a compounding pharmacy unless that Dr. sends it directly to you. We all need to keep sharing resources. As I said, my numbness persists but I have much more energy and my legs don't feel so heavy. Just returned from hiking in Sequoia National Park.

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Profile picture for moorethrpy @moorethrpy

@dbchip keep asking. I am not really surprised your docs are resistant as others including myself were turned down. It is fairly benign as to side effects. As I said, it was my Columbia U doc in NY who knew about it and prescribed. Another option is onlne. Dr.saleeeby@carolinaholisticemedicine.com. He is in Mt. Pleasant, SC but I did communicate with him online and he said he writes a lot of prescriptions for LDN. Good luck. And remember you need a compounding pharmacy unless that Dr. sends it directly to you. We all need to keep sharing resources. As I said, my numbness persists but I have much more energy and my legs don't feel so heavy. Just returned from hiking in Sequoia National Park.

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@moorethrpy What is LDN? I'm thinking low dose something????I am on low-dose Pregabalin (Lyrica). Thanks to anyone! Whoops! I just figured it out! 🙂

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Profile picture for Gail Richardson @gailannr

@moorethrpy What is LDN? I'm thinking low dose something????I am on low-dose Pregabalin (Lyrica). Thanks to anyone! Whoops! I just figured it out! 🙂

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@gailannr I guess you figured out we are talking about Low Dose Naltrexone. The only side effects that I had were dreams that were like Broadway musicals. Alas, they are a thing of the past. I wish all drugs had effects like LDN. As far as Low Dose Lyrica is concerned, my kidneys were too wimpy to handle it and had to stop. Watch your GFR with that one.

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Profile picture for suetex @suetex

@gailannr I guess you figured out we are talking about Low Dose Naltrexone. The only side effects that I had were dreams that were like Broadway musicals. Alas, they are a thing of the past. I wish all drugs had effects like LDN. As far as Low Dose Lyrica is concerned, my kidneys were too wimpy to handle it and had to stop. Watch your GFR with that one.

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@suetex Thank you.

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