1. < Polymyalgia Rheumatica (PMR)
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How to address PMR pain while decreasing prednisone

Posted by barbararene @barbararene, Feb 13, 2017

I have been diagnosed w poly myalgia rheumatica (pmr). Am taking 5 mg of predisone, was taking 10mg.
Every time I go on a low dose, symptoms come back. I can't take pain meds, but do drink wine to ease pain, although I'm told no alcohol w prednisone. Anything you can share as far as info

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kimmgb | @kimmgb | Oct 28 4:03am
In reply to @janielou56 "Dear @alissahe Have you and your Dr. thought about combining your prednisone with Low dose Naltrexone..." + (show)
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Dear @alissahe
Have you and your Dr. thought about combining your prednisone with Low dose Naltrexone (LDN)4.5
I believe that it's been helpful for me.
I was diagnosed with PMR eight months ago.
Was put on 20 mg of prednisone by my GP. The prednisone started taking my pain away within days to a tolerable level But I struggled with lots of side effects.
Two weeks after that my functional doctor included LDN.
After reading some articles about
Splitting prednisone I got permission to take most of my prednisone in the morning with my breakfast. Then 1 mg of prednisone at night before I went to sleep so that I could wake up without much pain and get a good sleep.
Today I'm down to 6mg of pred 5+ LDN in the am and 1 at night bf bed.
My functional doctor also said that if I had pain anywhere I could take Traumeel ( an analgesic) as needed. So far the journey has been tolerable and my moon face has slowly disappeared.
Good luck to you in your PMR journey.

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@janielou56
Look into taking a biologic drug. I am on Actemera and was able to reduce my prednisone to 1mg. There are other drugs as well. Good luck with reducing. The key is very small reductions, 1/2 a mg every 4-6 weeks. Worked for mev

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savitchcrew | @savitchcrew | Oct 28 11:25am
In reply to @johnbishop "Hello @aeckman, Welcome to Connect. Sorry to hear you have joined our PMR club but happy..." + (show)
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Hello @aeckman, Welcome to Connect. Sorry to hear you have joined our PMR club but happy to see that you have joined Connect. You are not alone with your PMR/prednisone struggles. Thanks to @dadcue, here are a few discussions with videos to help you learn a little more about PMR and hopefully get you on your road to tapering off of prednisone.
-- History of PMR -- Interesting video presentation from past to present.
https://connect.mayoclinic.org/discussion/history-of-pmr-interesting-video-presentation-from-past-to-present/
-- Comprehensive Overview Of PMR
https://connect.mayoclinic.org/discussion/comprehensive-overview-of-pmr/
-- Video: Steroids and PMR - International Panel of Doctors
https://connect.mayoclinic.org/discussion/video-steroids-and-pmr-international-panel-of-doctors/
You mentioned having your questions passed off when talking with your doctor. Have you thought about meeting with a rheumatologist?

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@johnbishop As you will hear, PMR affects people differently, we respond differently to medication and our pain can be different - one size does not fit all. So there aren’t a lot of concrete answers to anything. I too wanted to get at the root cause and snuff it out. Still looking after two years! Still asking my Rheumatologist lots of questions - many which get answered with “We just don’t know.” And still trying different drug regimes (as well as diet, exercise when I can) to calm the PMR storm. Good luck!

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jabrown0407 | @jabrown0407 | Oct 29 7:06am

Consider an anti-inflammatory diet. That helped me . In the end I gave up refined sugar and simple carbs. I did not give up wine!

Not a good time of year to start, but it certainly is something to consider. It helped me. I didn't lose much weight. I have a friend who did the same and loss 25 pounds in a year. I only lost about 10.

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munster1951 | @munster1951 | Oct 29 12:18pm
In reply to @jabrown0407 "Consider an anti-inflammatory diet. That helped me . In the end I gave up refined sugar..." + (show)
Profile picture for jabrown0407 @jabrown0407

Consider an anti-inflammatory diet. That helped me . In the end I gave up refined sugar and simple carbs. I did not give up wine!

Not a good time of year to start, but it certainly is something to consider. It helped me. I didn't lose much weight. I have a friend who did the same and loss 25 pounds in a year. I only lost about 10.

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@jabrown0407
I gave up alcohol which means my evening martini and beer. I am now buying NA beer so I still get the taste. 😀😀

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54pontiac | @54pontiac | Oct 30 9:29am
In reply to @munster1951 "@jabrown0407 I gave up alcohol which means my evening martini and beer. I am now buying..." + (show)
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@jabrown0407
I gave up alcohol which means my evening martini and beer. I am now buying NA beer so I still get the taste. 😀😀

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@munster1951 I have found NA beer to be a good replacement as well. And I can drink as many as I want and still drive! Party on...

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Elizabeth R | @elizabethannr | Oct 31 9:00am

I am now nearly all gluten free and sugar free and feeling the better for it. I do have my one glass of Cabernet at 5 PM however, and my rheumatologist knows it and did not object so I imagine this is an individual matter.

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kare1 | @kare1 | Oct 31 12:25pm

Hey? has anyone asked about taking THC gummies and such? Some states it’s legal some it’s not (illegal in my state but surrounded by states that sell the stuff). I’ve not tried it but it just occurred to me to ask what yall have heard or think of medical marijuana for pain or sleep help.

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kaljean | @kaljean | Oct 31 1:09pm
In reply to @kare1 "Hey? has anyone asked about taking THC gummies and such? Some states it’s legal some it’s..." + (show)
Profile picture for kare1 @kare1

Hey? has anyone asked about taking THC gummies and such? Some states it’s legal some it’s not (illegal in my state but surrounded by states that sell the stuff). I’ve not tried it but it just occurred to me to ask what yall have heard or think of medical marijuana for pain or sleep help.

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@kare1 I like a gummy for sleep....no effect on pain for me.

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kare1 | @kare1 | Oct 31 7:40pm
In reply to @kaljean "@kare1 I like a gummy for sleep....no effect on pain for me." + (show)
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@kare1 I like a gummy for sleep....no effect on pain for me.

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@kaljean
Ahhh So it’s ok if you’re on prednisone? Or methotrexate? Very interesting 🧐! 😉

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