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.

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

hopeinal | @hopeinal | May 21 9:33pm
In reply to @dadcue "I was never sold the idea that I would be "pain free." I was told the..." + (show)
@dadcue

I was never sold the idea that I would be "pain free." I was told the pain would be managed with prednisone and the pain would be more tolerable. Yes ... the pain was more tolerable when I took enough prednisone but never was I pain free during the more 12 years I took predisone.

I was able to taper off prednisone. My steroid withdrawal symptoms were rather painful. I had to keep reminding myself that PMR was in remission. After being off Prednisone for almost 3 years ... I still have some pain but the symptoms aren't anything like the onset of PMR.

Jump to this post

I was totally pain free within 3 hours of my first 10 mg dose of pred and stayed that way until i tapered down to 7.

REPLY
spmgka | @spmgka | May 22 9:53am
In reply to @ekgilpin1 "My rheumatologist told me the opposite. She said if I’m still experiencing pain, PMR is still..." + (show)
@ekgilpin1

My rheumatologist told me the opposite. She said if I’m still experiencing pain, PMR is still present. I don’t know who to believe anymore.
I have tapered down on Prednisone to 3.5 mg. I found that tapering by 1/4 mg at a time and staying on it for two weeks works best for me. I do have some minimal pain, mostly in my arms. But it has not increased.
I plan on having my adrenal glands tested when I get down to 3 mg. This has been a two-year journey for me.

Jump to this post

@ekgilpin1 The blood tests will confirm it for you.

REPLY
2 replies
ekgilpin1 | @ekgilpin1 | May 22 12:13pm
In reply to @spmgka "@ekgilpin1 The blood tests will confirm it for you." + (show)
@spmgka

@ekgilpin1 The blood tests will confirm it for you.

Jump to this post

You mean the inflammation markers should be in normal range?

REPLY
1 reply
spmgka | @spmgka | May 22 12:49pm
In reply to @ekgilpin1 "You mean the inflammation markers should be in normal range?" + (show)
@ekgilpin1

You mean the inflammation markers should be in normal range?

Jump to this post

Yes, or significantly reduced.

REPLY
abbeyc | @abbeyc | May 23 11:24am

I have weaned down to 1 mg 3 times and each time I get pain in my shoulders so I would up the dose again.
I have been reading a lot of comments from others about pain in shoulders while weaning off steroids . I find this to be very mysterious.
I switched to a new Rheumatologist who believes I no longer have PMR and that I probably have not had it for the past 1-2 years and I should get off steroids. I’m down to 2.5 mg and will quickly get off even with mild shoulder pain and hope it resolves itself or I will just live with it. I would love to someday know what the shoulder and upper arm pain is from.

REPLY
1 reply
abbeyc | @abbeyc | May 23 11:31am

Does anyone know or think Prednisone can cause (permanent?) muscle damage?

REPLY
1 reply
DadCue | @dadcue | May 23 1:32pm
In reply to @abbeyc "Does anyone know or think Prednisone can cause (permanent?) muscle damage?" + (show)
@abbeyc

Does anyone know or think Prednisone can cause (permanent?) muscle damage?

Jump to this post

Corticosteroid induced myopathy happens but the damage usually isn't permanent.

https://pubmed.ncbi.nlm.nih.gov/32491663/

Minimizing dose and duration of treatment is the most important safeguard to prevent this.

"Glucocorticoids have a direct catabolic effect on muscle, decreasing protein synthesis and increasing the rate of protein catabolism leading to muscle atrophy."

https://www.physio-pedia.com/Myopathy_Steroid_Induced
REPLY
2 replies
abbeyc | @abbeyc | May 23 2:11pm
In reply to @dadcue "Corticosteroid induced myopathy happens but the damage usually isn't permanent. https://pubmed.ncbi.nlm.nih.gov/32491663/ Minimizing dose and duration of..." + (show)
@dadcue

Corticosteroid induced myopathy happens but the damage usually isn't permanent.

https://pubmed.ncbi.nlm.nih.gov/32491663/

Minimizing dose and duration of treatment is the most important safeguard to prevent this.

"Glucocorticoids have a direct catabolic effect on muscle, decreasing protein synthesis and increasing the rate of protein catabolism leading to muscle atrophy."

https://www.physio-pedia.com/Myopathy_Steroid_Induced

Jump to this post

Yes thank you. I heard of myopathy from steroids. I should have been more clear with my question

But does this myopathy cause muscle pain? I have not found info that talks about pain. Just weakness.

REPLY
art43 | @art43 | May 24 8:55am
In reply to @dadcue "Corticosteroid induced myopathy happens but the damage usually isn't permanent. https://pubmed.ncbi.nlm.nih.gov/32491663/ Minimizing dose and duration of..." + (show)
@dadcue

Corticosteroid induced myopathy happens but the damage usually isn't permanent.

https://pubmed.ncbi.nlm.nih.gov/32491663/

Minimizing dose and duration of treatment is the most important safeguard to prevent this.

"Glucocorticoids have a direct catabolic effect on muscle, decreasing protein synthesis and increasing the rate of protein catabolism leading to muscle atrophy."

https://www.physio-pedia.com/Myopathy_Steroid_Induced

Jump to this post

The links you and others often provide are helpful, and can avoid repetitive explanations. Wishing that the admins would establish a library of PMR-relevant links to reputable academic sources (e.g., nih) that relate to the recurring issues presented by participants.

REPLY
1 reply
tuckerp | @tuckerp | May 25 11:44am
In reply to @abbeyc "I have weaned down to 1 mg 3 times and each time I get pain in..." + (show)
@abbeyc

I have weaned down to 1 mg 3 times and each time I get pain in my shoulders so I would up the dose again.
I have been reading a lot of comments from others about pain in shoulders while weaning off steroids . I find this to be very mysterious.
I switched to a new Rheumatologist who believes I no longer have PMR and that I probably have not had it for the past 1-2 years and I should get off steroids. I’m down to 2.5 mg and will quickly get off even with mild shoulder pain and hope it resolves itself or I will just live with it. I would love to someday know what the shoulder and upper arm pain is from.

Jump to this post

The lack of production of cortisol. The use of the steroids and the taper actually re-creates the PMR. This is from the NIH . Nat Institue of Health. sorry its in Dr language. "Cortisol dysfunction results in unmodulated inflammation following reactivation of the stress response, which may contribute to a cycle of inflammation, depression, and pain; pain is a stressor that may reactivate a proinflammatory stress response, now unmodulated due to cortisol dysfunction."

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.