1. < Polymyalgia Rheumatica (PMR)

Confused about PMR symptoms

Posted by sriecke0819 @sriecke0819, Nov 3, 2023

I was diagnosed with PMR in August by a rheumatologist. I was placed on 60mg
Prednisone. Began tapering and now I am down to 15mg when the symptoms are returning. He wanted me to drop down to 12.5 which I tried for 3 weeks but it was not without constant pain and stiffness. Then was told to go to 10. I did that for a couple days and wham! I was terrible. I couldn’t get out of bed, hard time doing anything. Then the second day new symptoms appeared. Pain in my 2 replaced knees, and extreme pain and swelling in both hands and wrists. I even had slight jaw pain. I also had the terrible shoulder, neck and hip pain. Went to the PA in my rheumatologist today and she told me that hand and wrist pain is not a symptom is PMR and it must be something else. I did have blood work yesterday when I called for the appointment and she said my levels were not bad. So she said to stay at 15 for 1 week and start the decreasing again. I am fearful to decrease again because I don’t want to go thru that again. It was awful!! It was like the 4 months prior to being diagnosed. Just wondering if any of you have experienced awful wrist and hand pain during a flare up? I am 62 year old female and my 60 year old brother also has PMR and has been on steroids for 2 years and is on 5 per day

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charlotte61 | @charlotte61 | Mar 18 1:36pm
In reply to @dj13 "@johnbishop Thanks for the welcome and info. If my inflammatory markers are normal, does diet still..." + (show)
@dj13

@johnbishop Thanks for the welcome and info.
If my inflammatory markers are normal, does diet still come into play?
I have reduced fried foods and meat portions along with eating more veggies. I am a meat lover and won't go full on vegetarian. I will have a look at the links you provided for more info.
I have an office job which is taking it's toll in terms of not moving enough.
I try to go for walks but hard to do so when in pain.

Jump to this post

I agree that diet can play a significant role. I cut red meat, processed/junk foods, and sugar from my diet. I found that cutting sugar made the biggest difference in keeping my PMR symptoms under better control as I taper my prednisone dose. I'm also working at lowering my salt intake to prevent my blood pressure from getting too high, but I find that more difficult to do because so many foods taste like nothing without salt, plus there's so much added sodium in the foods we buy. My biggest stumbling block, though, is carbs -- I love rice and pasta (gluten-free) and eat a lot of both, even though I know I should be cutting back on those too.

REPLY
art43 | @art43 | Mar 18 3:37pm
In reply to @dj13 "Hello, New to the group. Back in July of 2023, within a week and a half,..." + (show)
@dj13

Hello,
New to the group. Back in July of 2023, within a week and a half, I went from normal to needing help getting in and out of bed and even using a cane. I am only in my late 50's and was playing soccer in an 18 and over women's league until the Pandemic hit.

My GP sent me for blood tests and my inflammatory markers were around 75. He immediately put me on 20 mgs of Prednisone. Within 2 days, it was like night and day. Almost pain free. I was referred to a Rheumatologist.

Fast forward to December. On 10 mgs with shoulder, hand and wrist pain and the usual morning stiffness, then Jan 9 mgs,... Feb 8 mgs pain is worse in the hands and wrists. Had blood tests and xray and ultltrasound done on hands and wrists. Saw the Rheumatologist and all tests were normal. No arthritis, no inflammation and blood test had normal inflammatory markers.

The rheumatologist thought that I could possibly have Fibromyalgia and not PMR because he couldn't explain the hand and wrist pain. I'm not convinced, especially after reading the comments here. He said to keep going on walks and watch the foods I eat. He said that Tylenol is my friend and keep reducing my dose by 1 mg per month. I see him in 3 months....... not sure if I can handle the pain for that long.

Has anyone else experienced this? Am I relapsing?

Jump to this post

To dj13:
Your timeline, dosages, and remaining symptoms closely mimic my own experiences, including playing soccer ! One difference…I am 81 !
Starting in October, initially on P20, my dose had to be adjusted to P30 to tame the PMR beast. I started tapering after 30 days at 5 per month, then 1 per month, now down to P7.
During my last rheumy visit in January, she said my inflammation markers were now normal, and we were no longer treating PMR. The goal is therefore to get off the prednisone as quickly and safely as possible, and to therefore continue the 1mg monthly taper. Also, that my wrist pains could be expected to continue, and that I could take Tylenol, NOT any NSAID due to the conflict with the prednisone.
During a routine cardiology visit in February, I happened to mention my ongoing wrist and thumb pain (which at that time was up to level 3 in the morning, but went away by 3PM). My cardiologist ordered a wrist Xray which did not disclose any sign of any of the arthritises. Also, my RA lab was normal. And so, the morning wrist pain remains an undiagnosed mystery which I will continue to willingly tolerate, especially as I recently increased my morning Tylenol to 1000mg which make me pain-free by 10AM. In any case, this morning pain is almost certainly NOT something that should be treated with an increased dose of prednisone. Unless it can be determined using testing that the pain is in fact or probably PMR, increasing the prednisone is probably not the correct solution for so many reasons, the main one being that it might make tapering to zero much more difficult without risking adrenal insufficiency.
My rheumy did give me permission to use OTC topical diclofenac 1% on my wrists if desired. Although diclofenac is an NSAID, if used topically only about 5% gets into your circulatory system and therefore does not create a problem with the concurrent prednisone as it would do if the diclofenac were taken orally in pill form. For the time being, I have decided that my current pain profile does not warrant experimenting with yet another drug.
Thought for the day: After being treated for PMR, returning pain is not always PMR, and should not be automatically treated with an increased dose of prednisone without testing and a doc agreeing.
Best of luck to everyone…this too shall pass !

REPLY
1 reply
nyxygirl | @nyxygirl | Mar 19 7:48am

" I did have blood work yesterday when I called for the appointment and she said my "levels were not bad.""

Levels were not bad - what does that mean, especially if they did not say levels are normal ??? are you having a relapse with return of inflammatory markers ?? You might be a candidate Kevzara or even the IL-17 trial.

When i was having symmetrical pain in upper arms down to wrists , my oesteopath treated my neck, since i have a history of cervical neck issues. -that pain completely went away. Later as i was tapering from around 7mg/day by 0.5mg /month , my thumbs had pain the morning. I have NO history of joint pain. Both the osteopath and my rheumatologist examined my thumbs, i even had a repeat Rh factor test, so i think , like others are saying this is part of the pain(s) of the prednisone withdrawal.

this was something i found when searching for "pain distal to shoulder and hip girdle in PMR" and also the paper below
https://academic.oup.com/rheumatology/article/56/4/506/2631560
"There is a high prevalence of peripheral musculoskeletal manifestations in GCA and PMR including peripheral arthritis, distal extremity swelling with pitting oedema (RS3PE), tenosynovitis and/or carpal tunnel syndrome occurring in up to 25 and 50% of patients, respectively [44–46]."

Shared files

Peripheral Musculoskeletal Manifestations in Polymyalgia Rheumatica (Peripheral-Musculoskeletal-Manifestations-in-Polymyalgia-Rheumatica.pdf)

REPLY
nyxygirl | @nyxygirl | Mar 19 8:12am

@sriecke0819 i notice you first posted in Nov 2023 -and people are commenting again now - how are you feeling now ?

i like this figure from a very recent paper ( which has a 2022 follow up ) describing 5 classifications of PMR patients .
do you consider yourself class 3 - recovery before worsening ??

Shared files

kez533 2020 sara muller (kez533-2020-sara-muller.pdf)

rkac034 muller 2022 muller cohort follow up (rkac034-muller-2022-muller-cohort-follow-up-.pdf)

REPLY
dj13 | @dj13 | Mar 19 7:21pm
In reply to @art43 "To dj13: Your timeline, dosages, and remaining symptoms closely mimic my own experiences, including playing soccer..." + (show)
@art43

To dj13:
Your timeline, dosages, and remaining symptoms closely mimic my own experiences, including playing soccer ! One difference…I am 81 !
Starting in October, initially on P20, my dose had to be adjusted to P30 to tame the PMR beast. I started tapering after 30 days at 5 per month, then 1 per month, now down to P7.
During my last rheumy visit in January, she said my inflammation markers were now normal, and we were no longer treating PMR. The goal is therefore to get off the prednisone as quickly and safely as possible, and to therefore continue the 1mg monthly taper. Also, that my wrist pains could be expected to continue, and that I could take Tylenol, NOT any NSAID due to the conflict with the prednisone.
During a routine cardiology visit in February, I happened to mention my ongoing wrist and thumb pain (which at that time was up to level 3 in the morning, but went away by 3PM). My cardiologist ordered a wrist Xray which did not disclose any sign of any of the arthritises. Also, my RA lab was normal. And so, the morning wrist pain remains an undiagnosed mystery which I will continue to willingly tolerate, especially as I recently increased my morning Tylenol to 1000mg which make me pain-free by 10AM. In any case, this morning pain is almost certainly NOT something that should be treated with an increased dose of prednisone. Unless it can be determined using testing that the pain is in fact or probably PMR, increasing the prednisone is probably not the correct solution for so many reasons, the main one being that it might make tapering to zero much more difficult without risking adrenal insufficiency.
My rheumy did give me permission to use OTC topical diclofenac 1% on my wrists if desired. Although diclofenac is an NSAID, if used topically only about 5% gets into your circulatory system and therefore does not create a problem with the concurrent prednisone as it would do if the diclofenac were taken orally in pill form. For the time being, I have decided that my current pain profile does not warrant experimenting with yet another drug.
Thought for the day: After being treated for PMR, returning pain is not always PMR, and should not be automatically treated with an increased dose of prednisone without testing and a doc agreeing.
Best of luck to everyone…this too shall pass !

Jump to this post

@art43 wow. Very similar.
I am going to stick to my 7 mgs for now and add Tylenol. My Rheumatologist also suggested voltaren on my wrists. Did the voltaren before bed and less pain in the morning.
Thanks for sharing and best of luck to you as well.

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