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

@johnbishop

When it went away the first time I felt pretty good and about the same as before. For me there was such a sharp difference in the pain level when the PMR was active and when it went into remission. For the first week or so after I stopped taking the prednisone I had a little pain but nothing like before. I think that may be part of the withdrawal from prednisone. The second time it was a little easier for me because I knew what to expect and I pushed a little getting off of the prednisone. The first occurrence I was going back and forth each week the last six months between 1 mg and 1/2 mg until I could finally stop taking the prednisone with a little ache but not real pain.

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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?

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@rogernj67

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?

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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

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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.

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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.

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@johnbishop

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

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

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@rogernj67

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

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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.

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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.?

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@rogernj67

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.?

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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.

Liked by Jamie Olson

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@johnbishop

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.

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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.

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@rogernj67

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.

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@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.

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@johnbishop your johnny on the spot lol

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I was diagnosed with Giant Cell arteritis and PMR in July, started on 60 mg of prednisone daily and now down to 20. I was told that both of these conditions often showed up at the same time. Anyone else have the Giant Cell arteritis? I too fear the neck/shoulder/back pain coming back when I get down to 10 mg per day. SED rate is back to normal, it was 92.

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@beryl

Roger I can't get back to you right now as I have people staying but will,write soon Beryl

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My goodness Roger you certainly got some good response to your post …..
My guests have gone to bed now and I have been reading through the things,that people have been saying to you….
We are , in my opinion very lucky to have on our side , John , he is always there for us and I really want to say a big THANK YOU to him for his support…..
I don't know what I can add but please don't loose heart and try to keep a good attitude to this episode in your life …..you will come out the other end and it is important that you keep as UP as you can……I am from Blighty, that means the UK and just think up and at em! …….keep in touch and hopefully we can keep you that way……..Beryl

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@dar9216

I was diagnosed with Giant Cell arteritis and PMR in July, started on 60 mg of prednisone daily and now down to 20. I was told that both of these conditions often showed up at the same time. Anyone else have the Giant Cell arteritis? I too fear the neck/shoulder/back pain coming back when I get down to 10 mg per day. SED rate is back to normal, it was 92.

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Hello dar9217 my name is Beryl and I too along with more of us have this worrying condition …..I appear to be ok at the moment having had preds. at a high level for quite a while but always hopeful that this continues ……you sound like you are doing just fine , just keep doing what the Doctor tells you and hopefully it will not come back ….I think that attitude has a lot to do with it so try to think up and keep your chin up …..

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@dar9216

I was diagnosed with Giant Cell arteritis and PMR in July, started on 60 mg of prednisone daily and now down to 20. I was told that both of these conditions often showed up at the same time. Anyone else have the Giant Cell arteritis? I too fear the neck/shoulder/back pain coming back when I get down to 10 mg per day. SED rate is back to normal, it was 92.

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Hi @dar9216, welcome to Connect. I have PMR but not Giant Cell Arteritis although the doctor tested me for it. There is another discussion you also be interested in reading through for GCA here:

Groups > Autoimmune Diseases > giant cell arteritis
https://connect.mayoclinic.org/discussion/giant-cell-arteritis-20c716/

We all have the fear of the pain coming back but I wouldn't focus on it. You are doing great getting down to 10 mg from 60. Do you have any pain now at 10 mg dosage? Are you still trying to taper off of prednisone?

John

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