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Low Dose Naltrexone
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.
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Also curious about why some pain docs seem to be unfamiliar with it, at least that's my impression.
I agree. Even my PCP and Pulmonologists were familiar with off label benefits of both LDN and Alpha Lipoic Acid. Many times, I believe some physicians just stop learning. I am not a huge proponent of medication and try to do whatever I can via natural methods/tools.
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1 ReactionI don’t remember exactly because I’ve been on it 10 years, but I know it’s not immediately. It’s not like taking pain pills. Rather it causes the body to produce endorphins that reduce inflammation, so it takes awhile.
Side effects usually don’t last long - like a few days. I remember getting double vision that last a day and then my vision temporarily became crystal clear. Weird.
You didn’t mention what dose you started at, but it’s recommended to start low at .5 to 1 mg and increase slowly until you find a sweet spot.
It helps me sleep but some people take it in the morning if it keeps them awake. I wouldn’t give up after one dose unless the side effect was intolerable or there was an allergic reaction.
I think it takes time for word to get around. I’m finding more of my doctors are becoming aware of it. We need to educate them.
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1 Reactionthank you for sharing the good news about LDN It is definitely the only drug that has helped me with no side effects. I am not sure why more docs don't prescribe this drug for pain. I also have experienced a sense of well being rather than despair about my condition.
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3 Reactions@bunstuffer I have asked myself the same question about LDN. Why don't Doctors prescribe more routinely? It has to be that they are more inclined to use Big Pharm's more profitable drugs. My Rheumatologist refused to prescribe it saying "It doesn't work.". It is 'off patent' so big pharma can not monopolize...can be made by any company. I am so happy to be receiving some relief...with no side effects.
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2 Reactions@moorethrpy I have brought up LDN to most my Neurologists over the last several years in treating my pain. They both looked at me like they never heard of it. I was really surprised since they both were highly regarded doctors who worked at Academic Medical Centers. Going to see if my pain doctor will let me try it in a few weeks when I see her.
So glad this thread is here to confirm the success I’ve had with LDN. 4 years at 4.5 mg and no pain. I told my neurologist about it & he now prescribes it often to others. Now we need something for the numbness.
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1 ReactionThanks to LDN my Crohn's is a thing of the past. I am only on 2 mg. I did convince my Neurologist to try it and now he has been using it for several years. I have been using it since 2019.
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1 Reaction@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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