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.
Interested in more discussions like this? Go to the Neuropathy Support Group.
I hear that. Same here. If you have a compounding pharmacy nearby you might call them and ask if they'd be willing to say who is prescribing it. Surely a pain doc should be familiar with it. At least you would hope or think so.
That’s an excellent idea and one others have successful.
Over a year ago I started LDN. I felt so lucky my doctor could prescribe it.
Taking ldn was definitely helping to manage pain. But then I started getting uncontrollably movements when I talked. A strange sensation. It was worse when I was nervous. My Dr thought it may be oromandibular dystonua and suggested I might go to a neurologist. I did not.
I stopped the LDN and the pain came back.
I had the same kind of reaction when I tried PALMITOYLETHANOLAMIDE and had to stop. I do take Wellbutrin and am wondering if my sensitivity to the 2 medications had something to do with also raking Wellbutrin. There seems to be some kind of Dopamine component to it all. I know Palmitoylethanolamide works for people who have Parkinson's disease. Any one who can shed light on this please chime in. I did not go to a neurologist.
@jaj7 Did your doctor ever mention the possibility of your uncontrollable movements being
due to tardive dyskinesia caused by the Wellbutrin, which is a documented side effect?
I’m happy to hear the LDN worked for your pain and hope you can go back on it someday.
Best of luck!
I asked my Neurologist about LDN and she was quite willing to prescribe it for my Neuropathy, despite the fact that my pain levels do not necessitate pain meds. The point was to determine if it might be of value. In my case it was not. However, it has proven to be quite effective for others. It is cost effective, has no "habituation" potential, has no side effects and does not cause liver, or other organ damage.
I see no reason not to try it. You may be one of those who experience relief.
If so, you are quite fortunate
There is one called Naltrex in either 1.5 or 4.5 mg. Expensive compared to compounding.
That’s a bummer. I was hoping a mass produced pill would be cheaper than a compounded one. Maybe some day
I’ve been on 4.5 mgs for three years and the compound pharmacy charges me $35.00 for 90 pills. I use PUBLIX to Compound & Medicare covers it.
Any pain management doctor or for that matter just about any doctor can prescribe it but, some need to be educated about it.
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?
My PCP agreed to prescribe it. He said he has a few others on it but didn't say what for. He told me to take the 50mg pills and cut them in 4ths or smaller if I could. Compounding pharmacies are few and far between in the rural cornbelt. I just started taking 3 days ago and I understand it can take a month to realize any benefit. He kept repeating that he was prescribing them off-label and did I understand that? He also put that in the notes on My Chart. After reading some of these posts, I'm wondering if it is safe.