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Polymyalgia Rheumatica (PMR): Meet others & Share Your Story

Polymyalgia Rheumatica (PMR) | Last Active: Jan 27 8:38am | Replies (1879)
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@chris1466

Aloha

I have had PMR for six years I am 67 years old and was on prednisone for five out of six years.
I could not maintain remission for more than two months before PMR stuck it’s ugly head out again and I was nearly crippled again.!
I moved to Hawaii and found a Doctor Who recommended low-dose naltrexone
I have been on LDN now for almost one year
I think it’s something that the mayo clinic needs to look at and study.

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Replies to "Aloha I have had PMR for six years I am 67 years old and was on..."
DadCue | @dadcue | Jul 31, 2020

I don't know how naltrexone would work but I'm open minded.

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pfafpa | @pfafpa | Jul 31, 2020

Welcome to the community. Always good to hear of new treatments being tried. Prednisone obviously has many side effects but it’s been the gold standard for PMR pain. Naltrexone is an opiate antagonist, meaning it lessens the effect and desire of taking an opiate. Curious as to how it affects PMR pain, which is thought to be primarily vascular in nature. Has it worked well for you? Better than prednisone?

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John, Volunteer Mentor | @johnbishop | Aug 1, 2020

Hello @chris1466, I thought you might like to know Mayo Clinic already has a clinical trial -- Low Dose Naltrexone to Improve Physical Health in Patients With Vasculitis: https://www.mayo.edu/research/clinical-trials/cls-20438025. There is also other discussions here on Connect that you and others may want to join in and share your experience and how it's helped you.

Low Dose Naltrexone and Neuropathy: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-and-neuropathy/
Anyone with experience using Low Dose Naltrexone?: https://connect.mayoclinic.org/discussion/anyone-with-experience-using-low-dose-naltrexone/
Low-Dose Naltrexone for Chronic Pain: https://connect.mayoclinic.org/discussion/low-dose-naltrexone-for-chronic-pain/

@chris1466 Does your doctor recommend trying to eventually taper off of LDN when the PMR is controlled and in remission?

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