1. < Polymyalgia Rheumatica (PMR)

New PMR patient, wondering if mornings will become pain free someday

Posted by tedmbrady @tedmbrady, Sep 3, 2023

I am 69, fairly active, avid golfer, etc. After dealing with hip, hamstring and especially shoulder pain and extreme soreness I had my CRP measured a little more than a month ago (23.8) and was fairly quickly diagnosed by my GP as having PMR. I started with 15mg prednisone and after a week went to 20mg. This dosage allows me to play golf and be pain free (mostly) by midday. They referred me to a Rheumatologist whom I see on the 19th for the first time. I have a second blood test this Tuesday (5th).

Question: can I anticipate ever being pain free first thing in the morning (only shoulders hurt, but pain is not inconsequential)? Or is this an indication that maybe 20mgs is not yet enough? I realize I'm only 4-6 weeks into this, but other threads suggest the prednisone should be able to wipe this out for now (I realize it is with me forever and might rear its head in months or years, but hoping this first episode finally goes away for awhile).
Thx
Ted

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richardab | @richardab | May 16 9:11am
In reply to @isabelle7 "@richardab You mentioned you're taking Advil with Prednisone. Our doctor, who is also the Chief of..." + (show)
@isabelle7

@richardab
You mentioned you're taking Advil with Prednisone. Our doctor, who is also the Chief of Rheumatology, said my husband should not take any NSAIDs and the only thing he can take for pain is Tylenol. You might want to check with your rheumatologist. Evidently NSAIDs raise the risk of stomach ulcers and other issues.

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Thank you.

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spmgka | @spmgka | May 19 11:21am

I too had PMR a few years back. I am completely pain free now. They put me on prednisone and while it definitely was a miracle drug at the time, it led to other issues and I ended up on 5 different medications as a result. I slowly weaned off all drugs and I am completely fine today. I used to be a long distance runner and never did return to that; however, I am completely pain free to answer your question. There are other ailments that can cause pain, so perhaps there is a bit of arthritis or carpel tunnel if you are still experiencing pain. The blood tests should reveal if the pain is related to the PMR or if it could be something else.
Good luck - it is an awful disease for sure.

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1 reply
mac1955 | @mac1955 | May 21 1:29pm

Hello all:
I'm very recently diagnosed. I had 3 days of 10mg prednisone from PCP. The rheumatologist then put me on 20 for 5 days, 15 for 5, and then back to 10. Today is day 4 of the 20 mg dose. I am feeling much better but NOT pain free. I want to know what the real goal is: less pain/more function or no pain/pre-diagnosis function. I'll have another blood test on Friday, to see if the inflammation has responded to the steroid (I'm certain it has) and go from there.

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2 replies
megz | @megz | May 22 3:20am
In reply to @mac1955 "Hello all: I'm very recently diagnosed. I had 3 days of 10mg prednisone from PCP. The..." + (show)
@mac1955

Hello all:
I'm very recently diagnosed. I had 3 days of 10mg prednisone from PCP. The rheumatologist then put me on 20 for 5 days, 15 for 5, and then back to 10. Today is day 4 of the 20 mg dose. I am feeling much better but NOT pain free. I want to know what the real goal is: less pain/more function or no pain/pre-diagnosis function. I'll have another blood test on Friday, to see if the inflammation has responded to the steroid (I'm certain it has) and go from there.

Jump to this post

I know many talk about immediate relief from the prednisone, but it took me about 2 weeks to get the full benefit, so you may improve over the next week or so. I recall reporting to my doctor that there had been a disappointing 70% improvement only in the first couple of weeks.

You don't drop to 12.5mg and sit there for a few weeks? The jump from 15mg straight down to 10mg is quite a lot. I had 4 weeks on 12.5mg before reducing to 10mg, with drops of 1.5mg then 1mg at a time, down to 10. The general rule seems to be not to decrease by more than 10% of the current dose at a time.

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1 reply
DadCue | @dadcue | May 22 6:37am
In reply to @mac1955 "Hello all: I'm very recently diagnosed. I had 3 days of 10mg prednisone from PCP. The..." + (show)
@mac1955

Hello all:
I'm very recently diagnosed. I had 3 days of 10mg prednisone from PCP. The rheumatologist then put me on 20 for 5 days, 15 for 5, and then back to 10. Today is day 4 of the 20 mg dose. I am feeling much better but NOT pain free. I want to know what the real goal is: less pain/more function or no pain/pre-diagnosis function. I'll have another blood test on Friday, to see if the inflammation has responded to the steroid (I'm certain it has) and go from there.

Jump to this post

I didn't know anything about PMR when I was newly diagnosed ... in a way, I still don't know very much about PMR.

I knew quite a lot about taking prednisone because of a medical background. The other part was personal experience with taking Prednisone for other autoimmune disorders which were diagnosed at the age of 32. PMR wasn't diagnosed until I was 52 so twenty years of personal experience with taking Prednisone before PMR was diagnosed. Now I'm 15 years post PMR diagnosis.

The initial goal is to find a "stable dose" of prednisone that works for you." That was how my rheumatologist phrased it. At the time, it made sense to me because that wasn't happening at the beginning of PMR so I got off to a rough start.

I don't think being "pain free" is a realistic goal. I was happy with "tolerable pain" that didn't increase as I slowly tapered my prednisone dose lower. All of this was individualized so there are no universal rules that work for everyone. It is more about what works for you.

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54pontiac | @54pontiac | May 22 1:59pm
In reply to @megz "I know many talk about immediate relief from the prednisone, but it took me about 2..." + (show)
@megz

I know many talk about immediate relief from the prednisone, but it took me about 2 weeks to get the full benefit, so you may improve over the next week or so. I recall reporting to my doctor that there had been a disappointing 70% improvement only in the first couple of weeks.

You don't drop to 12.5mg and sit there for a few weeks? The jump from 15mg straight down to 10mg is quite a lot. I had 4 weeks on 12.5mg before reducing to 10mg, with drops of 1.5mg then 1mg at a time, down to 10. The general rule seems to be not to decrease by more than 10% of the current dose at a time.

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It also took me two or three weeks to become pain free on 10 mg. I asked the doctor if I should go up but he said no, and he was right. I eventually felt like Wonder Woman until I started tapering. At 3 mg now I am feeling my age but still no symptoms of PMR. I am doing the 10% taper.

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abbeyc | @abbeyc | May 23 11:19am
In reply to @spmgka "I too had PMR a few years back. I am completely pain free now. They put..." + (show)
@spmgka

I too had PMR a few years back. I am completely pain free now. They put me on prednisone and while it definitely was a miracle drug at the time, it led to other issues and I ended up on 5 different medications as a result. I slowly weaned off all drugs and I am completely fine today. I used to be a long distance runner and never did return to that; however, I am completely pain free to answer your question. There are other ailments that can cause pain, so perhaps there is a bit of arthritis or carpel tunnel if you are still experiencing pain. The blood tests should reveal if the pain is related to the PMR or if it could be something else.
Good luck - it is an awful disease for sure.

Jump to this post

Were you completely pain free while you weaned from Prednisone or did you have any type of mild pain during that process?

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1 reply
spmgka | @spmgka | May 23 4:36pm
In reply to @abbeyc "Were you completely pain free while you weaned from Prednisone or did you have any type..." + (show)
@abbeyc

Were you completely pain free while you weaned from Prednisone or did you have any type of mild pain during that process?

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while I weaned off

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chzuck | @chzuck | Jun 1 9:27am
In reply to @bradninchgirl "It took me 4 1/2 years to recover and come off Prednisone. After that, I managed..." + (show)
@bradninchgirl

It took me 4 1/2 years to recover and come off Prednisone. After that, I managed to reduced pain after adding CQo2 and Ensure to my diet. Don't quite understand why the last made a difference but it certainly did. I was so consumed by the effects of PMR I forgot to add in my age to it all. For the past year it's been being 79 years old that was the problem and when I started to treat myself accordingly life improved. Best of luck and good wishes. Keep trying and you will find an answer.

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Not familiar with CQo2. What is it and where do you buy it?

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1 reply
bradninchgirl | @bradninchgirl | Jun 1 11:10am
In reply to @chzuck "Not familiar with CQo2. What is it and where do you buy it?" + (show)
@chzuck

Not familiar with CQo2. What is it and where do you buy it?

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Sorry about that I shouldn't type without my glass's. It should have been

CoQ10 100mg with black pepper extract

and it's in most pharmacy's. I can't give you ingredients as I can't find my magnifying glass. Getting old sucks. Please let me know if I can give you more information. Again Sorry.

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