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 bajjerfan @bajjerfan

Atorvastatin tablets aren't scored, but I expect that each half is of equal composition. Too bad that it isn't available in 5mg size.

When the powder is formulated, the blend has to be of uniform composition or else how could one 50mg tablet be the same as all of the others in a bottle?

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Tablets are scored in order to provide a more even dose for each half and not because there is more active ingredient on one side than the other. If that was the case how would you know which was which?

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Profile picture for bunstuffer @bunstuffer

I've contacted 3 of my doctors now and they all are reluctant to prescribe Naltrexone.

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I have experienced the same thing..My rheumatologist said it is not effective for Raynaud's and won't even let me try it.

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Profile picture for moorethrpy @moorethrpy

I have experienced the same thing..My rheumatologist said it is not effective for Raynaud's and won't even let me try it.

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Of course LDN doesn’t treat Raynaud’s just like it doesn’t treat neuropathy, but it does treat the chronic pain associated with neuropathy, at least for me it has. If you have chronic pain with Raynaud’s, it might work for you. LDN was prescribed for me by my previous neurologist. Unfortunately, she left the practice. My new neurologist wanted to take me off LDN because she wasn’t familiar with it. Never even bothered to ask how it was working before saying that. My PCP now prescribes LDN for me. I wonder how your rheumatologist knows it won’t help you? Did she cite some study? It certainly would be an off label use just like it is for neuropathy. You might want to try another doctor.

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Any licensed MD can prescribe it off label or not. Still, many will not.

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Profile picture for jdp3 @jdp3

This thread is helpful. My provider, who is new to me, suggested I try it, and she said she would send me information before I decided. I haven't received it despite sending portal messages. I've been reading about it, including in the primary research literature and am ready to try it, but have a nagging worry due to her suggestion that I should learn about it first, and now her failure to follow up in communication or in sending in the prescription. What do you think might be the reason for the delay and her initial apparent hesitancy?

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Probably just a busy doctor…LND has been a game changer for me…no more joint pain…2 years in…

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