1. < Polymyalgia Rheumatica (PMR)

PMR - Decreased prednisone and pain returned

Posted by alan bruce @alanbruce, Dec 29, 2018

I was at 2mg for 6 weeks of prednisone and decided go down to 1 1/2 and after 2 weeks I started to have pain in my shoulders. Will 1/2 a mg make a that sort of difference. I have been on prednisone for 18 months and have gone up and down before... Any recommendation on what to increase the predisone to.

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joaniem5 | @joaniem5 | Mar 30 7:58pm
In reply to @johnbishop "Welcome @joaniem5, I'm sorry to hear that you have joined the PMR club but you have..." + (show)
@johnbishop

Welcome @joaniem5, I'm sorry to hear that you have joined the PMR club but you have come to the right place to learn more about the condition from the experiences of others. Tapering too much, too fast is a hallmark of PMR flares with the pain returning. I don't believe the inflammation markers by themselves dictate you have PMR. There are a lot of members who have normal CRP and ESR levels but still have PMR pain. Here's is some research for more information on the topic.

"Normal ESR and CRP should not stop to include PMR in differential diagnosis."
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: https://academic.oup.com/rheumatology/article/58/5/921/5285558

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10803996/

My rheumatologist had me keep a daily log with my level of pain (1 to 10) and my dosage of prednisone for that day. He also gave a suggested tapering schedule but emphasized that I need to listen to my body and not taper if the pain was too much. For me that was anything above a 2 when I woke up the next morning and it was time to try to taper down to the next lower level.

Do you keep a daily log of your prednisone dose and level of pain when you wake up?

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Thank you for your response. Yes on my own I am keeping a wellness journal. My ESR and CRP were both very high and now with being on prednisone they are in the normal range. I see my doctor in a week, so I am going to share the information you provided. I believe the people living this disease are the experts not the doctors.

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veronicamac | @veronicamac | May 16 8:13am
In reply to @johnbishop "You might want to give this tapering plan a try to see if it can help..." + (show)
@johnbishop

You might want to give this tapering plan a try to see if it can help you get off of prednisone.

-- Dead slow and nearly stop reduction plan:
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

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Hello John, I have just started that method today as after a flare up I had to wait until I was stable on the lowest I could reduce to which for the moment is 6mg. I have made a chart in a word document that will keep me focused on how much to take each day. I would be happy to send you a copy of this if you think you could use it to help others. Thank you so much for the work you do and the advice and support you give. Kind regards, Mary

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sherylp | @sherylp | May 16 5:04pm

Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with PMR. He started me on 10 mg of prednisone but I can’t get in to see the rheumatologist until Oct. My question is:
I am very active and I love to garden and do yard work. Will these activities exacerbate my symptoms or help them? I haven’t had it long enough to discover this. I’m on 10 mg of prednisone and I can already feel things getting better. But I don’t want to aggravate anything either. Also, does PMR affect your stomach at all? Like nausea?
Thanks for any help you can give.

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5 replies
Mentor
John, Volunteer Mentor | @johnbishop | May 16 6:38pm
In reply to @sherylp "Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with..." + (show)
@sherylp

Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with PMR. He started me on 10 mg of prednisone but I can’t get in to see the rheumatologist until Oct. My question is:
I am very active and I love to garden and do yard work. Will these activities exacerbate my symptoms or help them? I haven’t had it long enough to discover this. I’m on 10 mg of prednisone and I can already feel things getting better. But I don’t want to aggravate anything either. Also, does PMR affect your stomach at all? Like nausea?
Thanks for any help you can give.

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Hi @sherylp, Welcome to Connect. Sorry to hear you joined the PMR club. You asked a great question and I think the answer is it depends. For me, I could definitely tell when I overdid the activity. My pain would be a little greater the next morning when I first got up. You might want to scan through the following discussion to learn what others have shared.
--- Can PMR be induced by Exercise: https://connect.mayoclinic.org/discussion/can-pmr-be-induced-by-exercise/

I never had nausea as a symptom of my PMR but maybe others will jump in and share their experience. I've had two occurrences of PMR and was started on 20 mg prednisone for both. I kept a daily log to help with the tapering off of prednisone and logged my level of pain when I woke up along with my dose for that day.

Does the 10 mg daily dose of prednisone control the pain through the night into the next morning? Do you keep a daily log?

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sherylp | @sherylp | May 17 1:28am

I do believe the 10 mg is helping so much so far that I haven’t needed a higher dose. I never thought to keep a log or journal. This is all so very new to me but I certainly will start that. Thanks for the help. I am learning so much just reading everyone’s stories!

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1 reply
nancy53 | @nancy53 | May 17 8:37am

It seems strange that 1/2mg can make such a difference but it does! I've just tapered from 10.5 to 10 and am having the strangest little pops of pain (not terrible) everywhere! I'll see how I do in the next few days, I want to at least maintain a taper of some sort. Tapering is so individual and apparently quite random in nature. Good luck!

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1 reply
virginiaj | @virginiaj | May 17 9:01am
In reply to @sherylp "I do believe the 10 mg is helping so much so far that I haven’t needed..." + (show)
@sherylp

I do believe the 10 mg is helping so much so far that I haven’t needed a higher dose. I never thought to keep a log or journal. This is all so very new to me but I certainly will start that. Thanks for the help. I am learning so much just reading everyone’s stories!

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This is my 3rd bout. My starting dose was 10 and I never needed to go higher. I am now on 1, tapering to 1/2. The advice I got was to do range of motion exercise, avoid overdoing. I walk, go to aerobics and do gardening and lawn work. At one point, I was removing hostas, jumping on a shovel and also kneeling on concrete, planting flowers next to a driveway and ended up with a severely swollen knee, which curtailed my activities for a long time. So would suggest you not overdo. Otherwise, I still enjoy all these activities and have obtained what I call a “little old lady” gardening bench which I sit on to weed or plant.

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2 replies
sherylp | @sherylp | May 17 9:32am
In reply to @virginiaj "This is my 3rd bout. My starting dose was 10 and I never needed to go..." + (show)
@virginiaj

This is my 3rd bout. My starting dose was 10 and I never needed to go higher. I am now on 1, tapering to 1/2. The advice I got was to do range of motion exercise, avoid overdoing. I walk, go to aerobics and do gardening and lawn work. At one point, I was removing hostas, jumping on a shovel and also kneeling on concrete, planting flowers next to a driveway and ended up with a severely swollen knee, which curtailed my activities for a long time. So would suggest you not overdo. Otherwise, I still enjoy all these activities and have obtained what I call a “little old lady” gardening bench which I sit on to weed or plant.

Jump to this post

Thank you for the advice. I had been doing my Silver Sneakers routine but stopped because I wasn’t sure if I would aggravate this unknown condition, but now that I have a diagnosis and a treatment, I will just need to test things out for myself. I imagine stress is especially hard on PMR symptoms as well as overdoing physical activity. I am starting my journal today. We will see. Thank you again.

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nancy334 | @nancy334 | May 17 12:23pm
In reply to @sherylp "Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with..." + (show)
@sherylp

Hi my name is Sheryl and I just recently got diagnosed by my PCP internist with PMR. He started me on 10 mg of prednisone but I can’t get in to see the rheumatologist until Oct. My question is:
I am very active and I love to garden and do yard work. Will these activities exacerbate my symptoms or help them? I haven’t had it long enough to discover this. I’m on 10 mg of prednisone and I can already feel things getting better. But I don’t want to aggravate anything either. Also, does PMR affect your stomach at all? Like nausea?
Thanks for any help you can give.

Jump to this post

I felt very nauseous …rather like a hangover or flu even before I started prednisone so I believe it is from the PMR…I did daily yoga and biked a lot until it became to difficult to do …so I think keep going as long as you can

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1 reply
nancy334 | @nancy334 | May 17 12:27pm
In reply to @nancy334 "I felt very nauseous …rather like a hangover or flu even before I started prednisone so..." + (show)
@nancy334

I felt very nauseous …rather like a hangover or flu even before I started prednisone so I believe it is from the PMR…I did daily yoga and biked a lot until it became to difficult to do …so I think keep going as long as you can

Jump to this post

For got to add that I read prednisone reduce your melatonin so I take 3 mg before bed and again through the night if I have trouble going back to sleep…but not after 3 am

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