How to address PMR pain while decreasing prednisone

Thank you. I don’t suppose supplements did any good. Turmeric, etc. Did you ever ask your Rheumatologist how often he sees PMR in his practice. I wonder about its prevalence?

I do think Turmeric helps with inflammation but I didn't start taking it until around the time of my second occurrence of PMR. I recently bought some Turmeric Ginger Tea at Trader Joe's that @lioness recommended and it does seem to help in the evenings and it's not bad tasting. The people I think that get the most from using Turmeric make "golden paste" and then use it recipes but I've never tried it. There is a great website that has a lot of information on it's use here:
-- https://turmericaustralia.com.au/turmeric-paste/

When I was struggling tapering off of prednisone for the first occurrence of PMR I talked with my rheumatologist and he was the one who told me of another of his patients who was a professional athlete that took 1/2 mg daily for almost a year before he was able to taper off with no pain. He did tell me he sees a lot more older folks with PMR but really didn't give any numbers. I did find a study in the UK mentioning the prevalence here:

Incidence, prevalence and treatment burden of polymyalgia rheumatica in the UK over two decades: a population-based study
-- https://ard.bmj.com/content/early/2018/10/08/annrheumdis-2018-213883

John

Roger , I did go to Mayo and I have seen two different Docs there. Both outstanding. I have gone to another major facility when visiting family, where they used a similar protocol as I was on for the last 15 months. It was a slow process with a decrease of the Prednisone level every month. This took a lot of patience but I was determined to follow what they outlined for me in my situation. Our Mentor John, gave me lots of support when I had questions.

Thank you. I wonder if I should go out there. I live in NJ. It could be that they tell me the same thing as I am being told here.

Thanks John. I didn’t realize you were over in UK. I was stationed in Mons, Belgium for 4 years many years ago.

Hi Roger, Actually I live in southern Minnesota ☺ I just found that article by a search. Most of my time in the Navy was spent in the Pacific and west coast of the U.S. I did get to see Hong Kong, The Phillipines, Japan, Hawaii, Guam, Vietnam and a few other places so consider myself fortunate.

Oh, ok. I guess that makes Mayo a lot closer for you than me. I just wonder if there is something above and beyond what I am presently being told that Mayo could provide. I will do anything it takes but would a long plane ride be worth it. Do they have anything new there, etc.?

Hi Roger, I have no medical training or background but with that said in my humble opinion PMR is what it is. I don't think there is a cure for it. There are only treatments and lifestyle changes you can make to help reduce the symptoms (my opinion). I would keep doing research for yourself and learning as much as you can. My hope is finding that one thing that has been overlooked that will help what ails me. ☺ Mayo Clinic has some good diagnosis and treatment information on PMR here:

Mayo Clinic - Polymyalgia rheumatica
-- https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/diagnosis-treatment/drc-20376545

Some interesting new information for PMR treatments

Breakthrough treatment for rheumatics: Common arthritis drug has been found to be effective for rare and debilitating rheumatic conditions (January 2017)
-- https://www.dailymail.co.uk/health/article-4143332/Breakthrough-treatment-rheumatic-conditions.html

ClinicalTrials.Gov - Study of Tocilizumab to Treat Polymyalgia Rheumatica
-- https://clinicaltrials.gov/ct2/show/NCT01396317

SP0055 Polymyalgia rheumatica new treatment (new steroid sparing agents) (2001)
-- https://ard.bmj.com/content/60/Suppl_1/A6.2

I'm hoping my PMR doesn't come back out of remission. Prednisone works to get rid of the pain but long term use is not good for me since I also have osteoperosis and thinning bones and fractures are a big risk for me which is one of the side effects.

Thanks for all the advice and the links. I sure hope it never comes back to you! You have a good attitude. My Rheumatologist said if I stress about things it will make the PMR worse.

@rogernj67 She is exactly right our emotions have a great deal to do with oir physical problems Dont let it overpower you ,you are a pain warrior as we all are who have pain.Glad have a fractured back ,fibromyalgia and other nerve problems but we can get through it its all in a positive attitude.