1. < Polymyalgia Rheumatica (PMR)

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

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

dar9216 | @dar9216 | Oct 20, 2018

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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2 replies
beryl | @beryl | Oct 20, 2018
In reply to @beryl "Roger I can't get back to you right now as I have people staying but will,write..." + (show)
@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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beryl | @beryl | Oct 20, 2018
In reply to @dar9216 "I was diagnosed with Giant Cell arteritis and PMR in July, started on 60 mg of..." + (show)
@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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Mentor
John, Volunteer Mentor | @johnbishop | Oct 21, 2018
In reply to @dar9216 "I was diagnosed with Giant Cell arteritis and PMR in July, started on 60 mg of..." + (show)
@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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rogernj67 | @rogernj67 | Oct 21, 2018
In reply to @johnbishop "I do think Turmeric helps with inflammation but I didn't start taking it until around the..." + (show)
@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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John, I guess my question is this. On the right dose of pred should I be in pain in the morning. I wake up in pain and stiffness, then take the pred and after a while I get fair relief for the rest of the day right up until bedtime. Then I wake up the next day in pain and repeat. Shouldn’t the right dose be giving me round the clock relief from the pain and stiffness? If so then I need a higher dose than 8-10mg. Thanks. Roger

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1 reply
rogernj67 | @rogernj67 | Oct 21, 2018
In reply to @barbararene "Let me share my story. I am 58 yrs old. I have always been really active..." + (show)
@barbararene

Let me share my story. I am 58 yrs old. I have always been really active by walking, biking, hiking, etc. February 2016 I started having some stiffness. I thought maybe it was stress related. Then it became worse and I had pain in my upper arms, thighs, neck, and buttock muscles. I couldn't get an answer from a physician. They kept trying to dose me w rheumatoid arthritis.
I was on vacation in June and I met a lady who was describing her symtoms to me. She had just been diagnosed w PMR. Her symptoms were exactly the same as mine. I went back to my Dr and told her I believed I had PMR (I understand it's hard to diagnose). She did some blood tests, found my inflammation factors to be high and the determining factor to diagnose was, immediately when I started taking the predisone, I felt completely healed. That was on 10mg. I read up on side effects of predisone and I don't want to take the medication, but find that I can't move wo it. I am now on 5 mg. I still have some pain and stiffness, but it is manageable. The dr wanted to put me on methaltrexate and I refused. It has been a year now. I find that stretching, even though it is painful and going for short walks helps. Some days I feel normal, but most days it is evident I have this stiffness. (I have named it the FRANKENSTEIN DISEASE)! I still get up and work every day until noon, and I try to get a couple of hours of rest each day. I am more tired than I use to be. I have read others stories that talk about people going into remission, so I am praying for that.
Barbara Rene'

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Hi Barbara, your beginnings of this disease are a lot like mine. How are you doing these days? I hope you are in remission. Roger

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Mentor
John, Volunteer Mentor | @johnbishop | Oct 21, 2018
In reply to @rogernj67 "John, I guess my question is this. On the right dose of pred should I be..." + (show)
@rogernj67

John, I guess my question is this. On the right dose of pred should I be in pain in the morning. I wake up in pain and stiffness, then take the pred and after a while I get fair relief for the rest of the day right up until bedtime. Then I wake up the next day in pain and repeat. Shouldn’t the right dose be giving me round the clock relief from the pain and stiffness? If so then I need a higher dose than 8-10mg. Thanks. Roger

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Hi Roger, that's a great question. My thinking is that the dose should give you relief from pain until the next dose. I know everyone is different but it just seems logical to my non-medically trained mind☺ I've heard of some folks splitting the dosage and taking some in the morning and some at bedtime but I would discuss it with the doctor. I don't think there are any cut and dried rules when tapering down on prednisone. If it were me and I was taking 10 mg daily each morning and felt good until bedtime, I might try taking 8 or 9 mg in the morning and 1 or 2 mg at bedtime. I would still ask the doc though.

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rogernj67 | @rogernj67 | Oct 21, 2018

That is what I will try to ask when I call tomorrow. He said come back in Dec but I am someone who likes to stay in touch more frequently than that! Hopefully the girls there will get him to give me an answer. His office seems very busy. Like most I imagine. Thanks John. I guess when I say fairly good until bedtime I mean able to use my legs and arms with tolerable stiffness. I know it is all subjective when it comes to pain.

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1 reply
dar9216 | @dar9216 | Oct 21, 2018

Thank you John. I am down to 17;5nmg per day may have mistyped. I'm dropping .5 every two weeks. I do not have pain which is wonderful. Thank you for the link to other GCA people. I've only spoken to one person with this and it wasn't a good picture.

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