Anyone have experience with Low Dose Naltrexone instead of prednisone?

I have been on Low Dose Naltrexone for 4 months starting at 1.5mg and now at 3.0mg. I was prescribed it by Mayo Pain Clinic for pain from Rheumatoid Arthritis and Fibromyalgia.
It has been a game changer. After just a few days my burning skin from Fibro went away and hasn’t come back. My brain fog has disappeared.
My joint pain from RA is 80% better than before LDN. I am still on Humira for RA to slow progression of the disease but since starting LDN, I no longer take 6-8 Advil a day nor any other pain reliever.
My terrible insomnia has gone away since starting LDN. I am now able to go to sleep within about 20 minutes and sleep about 8 hours every night.
I still have some fatigue from RA and Fibro but It is 50% better than before LDN.
It took me a year of researching LDN to find a doctor who would prescribe it because it is off label and is only gotten with a prescription and filled at a compounding pharmacy.
It’s definitely a game changer for me.

Hello @lutp, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. Thank you for sharing your experience with low dose naltrexone (LDN) and that a person needs to be a strong advocate for their health by learning as much as they can and doing their own research.

I'm wondering if @msstoppainnagginme and @fighter may also have some thoughts on their experience with LDN.

Are you able to share any tips on the research you found?

The most interesting research I found is that this drug has been around for over 20 years for autoimmune diseases, Fibromyalgia, and a whole lot more and yet we only hear about it by searching for articles or from friends and family who use it. It is a non toxic drug with only a few rare side effects.
I have mentioned my use of LDN to several people who could possibly benefit from it. However, they mostly will not research it. They assume it is a narcotic. It is not a narcotic. There is no withdrawal if you choose to go off of it. There is no “high” when you take it. It works on your endorphins to make you feel better.
I wish everyone with chronic pain etc would just give it a try. It’s a game changer for so many.

I’m on Lyrica it isn’t helping much and I can not go above 100mg because the pain feels wore and my legs swell. I’m being treated even though I was told by a rheumatologist I don’t have it. I’ve had been tested for Lyme, small fiber neuropathy. Had a EMG which showed I had lower back issues. Had MRI which showed a herniated disc, I did all the physical therapy, chiropractor. Had spinal surgery as a last resort. It’s been over 4 weeks and I have the same pain. Very sore feet, I can feel the folds in them, my skin is sensitive to everything. I have lots of odd sensations in my legs and buttocks when I walk. I feel the pain starting to affect my arm, upper back, shoulders and hand. I feel knots under my skin that hurt but the doctors don’t listen when I tell them that. This all started from a ankle injury. I use to be very active, I miss my life before this but I keep fighting anyway. Thanks for sharing!

Thank you for the info. I have neuropathy in both feet and legs from the knee down after knee replacement surgery. I am interested in LDN and now need to find a doc who can prescribe it and also follow progress.
Fran

Hi Rachel, I was considering trying it, please let me know if in fact it has helped you?

@sikocesca I filled a LDN script and never tried it. So sorry, I can't help you.

My rheumatologist prescribed it for me. I had bad bursitis I my leg and hip. I took it for a long time until I realized I wasn’t in pain any longer. My prescription was for a compound script and had to go to a special Walgreens to get it. It did help You have to make sure you don’t take any opioids.

I DO NOT TAKE ANY KIND OF PAIN MEDS. My neurologist said she would prescribe the LDN for me and would send it to Belmar pharm to compound it in Colo.
What dose did you start with???

Hello I use it and can't do without it as it really helps my pain. It is compounded at our local pharmacy. Mine is in the form of a troche (it dissolves in your mouth.) I am very sensitive to meds so I had to titrate up slowly. The only problem I have had is no one (docs) seems to know if I should stop it when having a minor surgery or being put to sleep for say an endoscopy. I usually just stop it 3-4 days before a procedure and then restart it. I have noticed that when being put to sleep...it takes longer to go to sleep. The doc will say you are going to sleep and they are all waiting for it to happen and I don't....then they crank it up eventually and I do:) Of course the LDN may have nothing to do with it. Oh yes, if I miss one day of LDN my joints hurt the next day. It does work for me. I have to take mine early in the morning otherwise it impacts my sleep.