Anyone have experience with Low Dose Naltrexone instead of prednisone?

Posted by vfaye @vfaye, Nov 19, 2019

I have been diagnosed with PMR and can’t take Prednisone.
LDN has been suggested - it has been used off label for autoimmune disorders. Has anyone heard of this?

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

My Mom has PMR, GCA, Raynauds and she is on a low dose of that drug and it's been fantastic for her. Not a single flare up and she's had some very stressful times with my Dad passing suddenly, she's selling her home & building another one and so much stress with all of that which can trigger a flare up and she's been good 🙏
Best of luck to you!

REPLY
@ddonnagirl1

I am on prednisone and can’t get under 2 mg. I have now decided to see a naturopath as well. It has been just about two weeks of taking many supplements for gut and inflammation. I had some back pain and she indicated it would be mostly gone in two weeks and it is! I am so hoping this will help me get off of the prednisone. She says 3 months, so for my bodies sake I’m going to give it a try! Good luck to all on this journey. BTW diagnosed with PMR 6-22! Pred was 60,40,20,15,12,10,9,8,7,6,5,4,3 now 2 mg! 2.5 years on prednisone.

Jump to this post

Sounds like you're in good hands with that naturopath...The one I chose had listed autoimmune as one of her specialties. I take LOTS of supplements under her care, but I am feeling so much better. Best wishes for your recovery!

REPLY
@wendy517

My Mom has PMR, GCA, Raynauds and she is on a low dose of that drug and it's been fantastic for her. Not a single flare up and she's had some very stressful times with my Dad passing suddenly, she's selling her home & building another one and so much stress with all of that which can trigger a flare up and she's been good 🙏
Best of luck to you!

Jump to this post

So sorry about your Dad passing. Your mom's response to the LDN is so encouraging. Thank you for sharing!

REPLY
@robinrae

So sorry about your Dad passing. Your mom's response to the LDN is so encouraging. Thank you for sharing!

Jump to this post

I'm more than happy to get some more info from her, I don't know all the details.

Wishing you all the best on your health journey ❤️

REPLY
@lutp

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.

Jump to this post

How long did it take to feel the full effects? I’ve gotten up to 3 mg and holding for a few weeks now but cannot say I notice anything. Maybe I’d be worse without but I just can’t know. My doc said I had fibromyalgia but not true rheumatoid arthritis. Perhaps that’s it. I do have autoimmune markers.

REPLY
Please sign in or register to post a reply.