Connect
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Neuropathy Support Group.
Connect
Just FYI Cymbalta is not new for pain. The drug is over 20 years old. It is also less expensive and a person can get generic if they want. Many people have good luck with Cymbalta. I just wanted you to know in case you ever consider it.
-
Like -
Helpful -
Hug
2 ReactionsI have taken Cymbalta and landed in the hospital for 3 days with serotonin syndrome in 2018 and a year later in 2019 I was in the hospital again for 5 days with low blood sodium from taking Cymbalta. I couldn't get off of it so I kept taking it for another year after they told me to back off of it but I got so sick when I skipped a dose that I kept taking it. BTW, I was taking 30mg daily. My husband has taken it for years for fibromyalgia with no side effects. There are many drugs that don't agree with me that most people can take with success.
-
Like -
Helpful -
Hug
2 ReactionsHi. After a dozen years of gabapentin at 3600 mg daily for my idiopathic poly neuropathy I ve just recently switched to 600 mg daily of a similar drug called parabalin ( Lyrica). Both have reduced my foot pain by roughly half. For me taking 3 pills daily rather than 12 is the main reason I switched. Thx for the info on ldn, I try it for my back pain. Best of luck going forward, always forward. John Maccorkindale
-
Like -
Helpful -
Hug
2 ReactionsI think most Drs don’t prescribe it because they either don’t know about it or they’re skeptical about prescribing something off label. I’ve helped educate several drs who didn’t know about it to where they will now prescribe it for me. Once they realize that prescribing such a low dose of a drug that is safe even in high doses, they’re not nervous about the liability.
The LDN Research Trust has printable prescribing information for drs. I used this for my first Dr .
Here’s the link. https://ldnresearchtrust.org/sites/default/files/2024-02/Dosing-Guide-2024.pdf
-
Like -
Helpful -
Hug
1 ReactionThat's a LOT of PreGabalin, but glad it's helping you.
How dreadful! I had a similar experience with Paxil. By the third day on it I thought my head would explode. Couldn’t stand up, and started speaking with a foreign accent! Ambulance hauled me off to the ER. I’ve had lots of problems with other drugs too. That’s why I was so happy to find that LDN works for me. Side effects are rare and usually mild - and especially with micro dosing.
Suz -I also had a run-in with Prozac when it first came out. The psychiatrist I saw thought it would be perfect for me because at first there were few reports of side effects. I took it for 2 weeks and started having horrible panic attacks. I refused to take Xanax for the symptoms but took a 10-week talk therapy clinic. It was months before I was free of recurring panic attacks.
-
Like -
Helpful -
Hug
1 ReactionI've contacted 3 of my doctors now and they all are reluctant to prescribe Naltrexone.
-
Like -
Helpful -
Hug
1 ReactionDoes anyone know if a drug company ever came out with a low dose Naltrexone pill that doesn’t have to be compounded?
@bunstuffer I can’t tell you how wise you were to refuse the Xanax and opt for talk therapy! They put me on Xanax for the horrific panic attacks and I took it every day for 23 years!! It took 2 years to slowly wean off it. Never again will I take benzos. I still have a lot of anxiety and occasional panic attacks- but deal with them by CBT, breathing, and prayer.