1. < Polymyalgia Rheumatica (PMR)

Circulating cortisol levels -- Does it have an effect on PMR?

Posted by DadCue @dadcue, Jul 10 11:41am

I was once told that cortisol levels had "nothing to do with PMR symptoms".

I'm more and more convinced that cortisol levels have a lot to do with PMR symptoms. This becomes more true when our prednisone dose is under 10 mg and when we try to taper lower than 7 mg. At least it was true in my case when I tried to taper off prednisone. My endocrinologist shed a lot of light on the problem with trying to taper off prednisone.

Two more interesting articles that are reasonably understandable.
https://www.medicalnewstoday.com/articles/322536
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Well, the second one isn't so understandable but the highlights are.
https://academic.oup.com/edrv/article/38/1/3/2959892?login=false

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

tuckerp | @tuckerp | Jul 10 12:36pm

I would agree completely with both articles. But I have the thought that PMR symptoms is a correct term. I think it would be hard to differentiate between prednisone taper and PMR symptoms they are almost identical. I also believe that the bodies slow response to cortisol production can or could restart the inflammation markers for PMR. Essentially sending you back to treating PMR. With that thought, PMR and cortisol are completely intertwined. Some studies have suggested that the bodies inability to produce enough cortisol in a PMR trigger also caused the original PMR. No one I think knows what caused the trigger. Everyone has an opinion. To summarize I would agree that PMR , RA, other autoimmunes may all have a connection to cortisol levels. I think thats what your saying?

REPLY
DadCue | @dadcue | Jul 10 1:41pm

"Some studies have suggested that the bodies inability to produce enough cortisol in a PMR trigger also caused the original PMR."

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I'm not entirely clear with this part. My understanding is cortisol levels are "normal" at the beginning of PMR. The triggers of PMR are stressful events and cumulative stress over time or maybe infections. There really isn't a "normal cortisol level" which is why cortisol levels aren't tested very often --- they are too variable. Cortisol levels are notoriously hard to interpret.

I think cytokine levels like IL-6 in particular can increase for some reason that isn't entirely clear to me. The pro inflammatory effects of IL-6 may overwhelm the ability of the adrenals to produce enough cortisol to regulate the excess inflammation. In a way ... there isn't enough cortisol but cortisol levels aren't abnormally low. I think it is more a case of too much IL-6 that throws everything out of whack.

That is just my opinion ... I don't really know. What seems very clear to me is how prednisone suppresses adrenal function over time. Sometimes I think it was a miracle that I was able to taper off prednisone.

I needed something that suppressed my IL-6 levels rather than the production of cortisol from my adrenals.

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1 reply
tuckerp | @tuckerp | Jul 10 2:17pm
In reply to @dadcue ""Some studies have suggested that the bodies inability to produce enough cortisol in a PMR trigger..." + (show)
@dadcue

"Some studies have suggested that the bodies inability to produce enough cortisol in a PMR trigger also caused the original PMR."

-------------------------------------------------------

I'm not entirely clear with this part. My understanding is cortisol levels are "normal" at the beginning of PMR. The triggers of PMR are stressful events and cumulative stress over time or maybe infections. There really isn't a "normal cortisol level" which is why cortisol levels aren't tested very often --- they are too variable. Cortisol levels are notoriously hard to interpret.

I think cytokine levels like IL-6 in particular can increase for some reason that isn't entirely clear to me. The pro inflammatory effects of IL-6 may overwhelm the ability of the adrenals to produce enough cortisol to regulate the excess inflammation. In a way ... there isn't enough cortisol but cortisol levels aren't abnormally low. I think it is more a case of too much IL-6 that throws everything out of whack.

That is just my opinion ... I don't really know. What seems very clear to me is how prednisone suppresses adrenal function over time. Sometimes I think it was a miracle that I was able to taper off prednisone.

I needed something that suppressed my IL-6 levels rather than the production of cortisol from my adrenals.

Jump to this post

You are a miracle child. You need to donate to science. Ok. I agree. I had a lengthy discussion on another site concerning how this all got started and how the body uses both natural cortisol and prednisone cortisol once you reach the 3mg range. I like you dont know the answer any better today. But lets take another example . My wife who has GBM. She was on 4mg dexamethasone. They told me to taper off so she could start immunotherapy. I could get her to 2mg and her inflammation would increase and she would get hydrocephalus and go into almost a coma like state. No pain with it. just go into a coma. Not at all the same symptoms as PMR. But Cortisol still had its role in her reaction to the taper. My education in corticosteroids is from a failed attempt to help my wife. Cortisol and PMR symptoms as you described are intertwined. Their relationship is dependent on each other. Where I get frustrated is the term PMR flare. Seems to be over used. Although it definitely describes the condition you are in.

REPLY
1 reply
DadCue | @dadcue | Jul 10 3:22pm
In reply to @tuckerp "You are a miracle child. You need to donate to science. Ok. I agree. I had..." + (show)
@tuckerp

You are a miracle child. You need to donate to science. Ok. I agree. I had a lengthy discussion on another site concerning how this all got started and how the body uses both natural cortisol and prednisone cortisol once you reach the 3mg range. I like you dont know the answer any better today. But lets take another example . My wife who has GBM. She was on 4mg dexamethasone. They told me to taper off so she could start immunotherapy. I could get her to 2mg and her inflammation would increase and she would get hydrocephalus and go into almost a coma like state. No pain with it. just go into a coma. Not at all the same symptoms as PMR. But Cortisol still had its role in her reaction to the taper. My education in corticosteroids is from a failed attempt to help my wife. Cortisol and PMR symptoms as you described are intertwined. Their relationship is dependent on each other. Where I get frustrated is the term PMR flare. Seems to be over used. Although it definitely describes the condition you are in.

Jump to this post

Let me think about that for a while. GBM is entirely different than PMR. I have IV pushed more steroids than I care to think about at the moment. I never gave it much thought because it was necessary ... more like a life and death situation. I'm not sure what I think about that. I know how difficult that is. How is she doing?

You can message me if you wish.

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