PMR - What do you wish you had known . . .

@bandorino
I love your question …
Why and how might accumulated stress trigger and autoimmune response?
I think I’veasked myself this daily since waking up one day fully inflamed and barely able to roll over in my bed.

@pawprintpeg

"Why and how might accumulated stress trigger an autoimmune response?"
---------------------
I don't think stress causes an autoimmune response directly. I think chronic stress impacts the delicate balance of the immune system because of the production of cortisol which is called the stress hormone.
https://pmc.ncbi.nlm.nih.gov/articles/PMC11546738/
-------------------------
I'm going to turn it over to artificial intelligence to explain what stress does:

"The Cortisol Shift:
In response to chronic stress, the brain's Hypothalamic-Pituitary-Adrenal (HPA) Axis continuously stimulates the adrenal glands to produce cortisol.

Receptor Desensitization:
Under short-term stress, cortisol helps suppress inflammation. However, prolonged exposure causes immune cells to become resistant to cortisol's anti-inflammatory signals, leading to glucocorticoid receptor impairment.

Immune Dysregulation:
This resistance means cortisol can no longer properly regulate the immune system. Consequently, cytokines—proteins that mediate immune responses—become imbalanced, promoting systemic inflammation and reducing the body's ability to tell the difference between "self" and "non-self".
===================
From my personal experience I think genetics and an infection were causal factors for my first autoimmune condition. It was called "reactive arthritis" which derives its name from a reaction to an infection in genetically predisposed people.
https://www.ncbi.nlm.nih.gov/books/NBK499831/
Reactive arthritis is plagued by the same diagnostic problems and treatment difficulties as PMR/GCA.
--------------------------------
There are other various reasons that have been hypothesized for why the body might lose the ability to differentiate between "self" and "non self." There are only theories so nobody knows for sure.

The way that Prednisone further disrupts the delicate balance of the HPA axis and the immune system ability to regulate systemic inflammation makes me think that prednisone isn't the best solution to the problem of autoimmunity. My body didn't "reset itself" until I was able to wean myself off Prednisone.

@grownupcf
For what it’s worth, the rheumatologist who put me on Kevzara said not to taper for the first 90 days until the Kevzara was fully at work. Then he said to taper at the rate of 1 mg a week which seemed unusually aggressive, but it worked.I followed that advice. I am no longer on prednisone for which I’m grateful. I was advised to stay on Kevzara for a year before beginning to taper off it.

@cwbf

Perfect! ... That was exactly how I tapered off Prednisone. The only difference was that I started Actemra instead of Kevzara. Either one seems to work for people depending on if their diagnosis is PMR or GCA or both.

I took Prednisone for 12 years to treat PMR. I was never able to get under 10 mg of Prednisone for very long no matter how slowly I tapered. I was still able to taper off Prednisone.

When Actemra was started, I did a slow taper for the first 3 months. I also did the 1 mg per week taper from 7 mg to 3 mg. I had to stay on 3 mg for 6 months because of adrenal insufficiency and a low cortisol level. When my cortisol levels improved, an endocrinologist said there was no need for me to taper from 3 mg to zero as long as PMR was controlled. AND my cortisol level stayed in the normal range. I was too scared to stop Prednisone abruptly so I did a fast taper by going from 3 mg to zero in a week.

I wish I knew about IL-6 inhibitors when I was first diagnosed with PMR. Unfortunately the research wasn't completed and Actemra was only FDA approved for GCA in 2017.

Kevzara was FDA approved for PMR in 2023. I was diagnosed with PMR in 2008 so that would explain why IL-6 inhibitors and treating PMR/GCA with a biologic were never mentioned to me. I was told about IL-6 and Actemra in 2019. I was willing to try Actemrs without any guarantee it would work.

I received negative feedback at the time when Actemra was started in 2019 on another PMR forum. The resident expert on that forum said how dangerous Actemra was without having any personal experience with any biologic. The claim was that doctors in the USA were "breaking the rules" for treating PMR with Actemra.

I'm extremely happy that my rheumatologist broke the rules because now I have been Prednisone free for 6 years. I consider treating PMR/GCA with IL-6 inhibitors as a major breakthrough for my inability to taper off Prednisone after 12 years.

@dadcue Super helpful. I find this journey to be a weird one. With many people on the outside looking at me like I was a freak for considering Kevzara (that was after they kept referring to what I have as arthritis or as noted in my first post, just a reality of getting old 🤬). That it seems like overkill (for lack of a better word). Yet it seems like many of these same people have no issue with GLp1s.
And @cwbf Thanks for the 90 day note. I was hoping this would kick in sooner.

@tweetypie13 Thanks for this. It seems that when I cut down it was the PMR coming back (classic back of arm pain, heaviness in legs, etc.) But truly, I'm not sure if that's the cortisol issues too.
I guess that's my next question: How do you handle the reawakening of the adrenals? Is it just live with it for a bit? Or does the slow or alternating tapering help?

@tweetypie13 I started May 18, 2026.

@franklinlala My dr suggested ……to help taper off prednisone….
Note: he neglected to tell me that key point

@grownupcf

It doesn't exactly "kick in" after 3 months. IL-6 inhibitors should be working and doing their thing from day #1. Within a couple of days your ESR and CRP should drop to almost zero. Your symptoms of PMR however don't go away immediately in the way Prednisone works. You don't get the instant gratification that prednisone gives you.

The 3 months is for Kevzara to reach a "steady state" in your system when you do the injections. After it reaches a steady state, people should be able to taper Prednisone faster. However, you still need to allow time for your adrenals to recover. The endocrinolgist I saw said it could take months or years for my cortisol level to improve. I needed to stay on 3 mg or less of Prednisone in order for my adrenals to show signs of recovery. I didn't feel so well on 3 mg of Prednisone but the endocrinologist encouraged me to stay on 3 mg.

It took 6 months for my adrenals and HPA axis to recover from being suppressed by prednisone. It takes some people a longer time and some people a shorter time to produce adequate levels of cortisol again. Once Prednisone was out of my system this allowed my HPA axis to "reset" itself although I still have some hormone imbalances 6 years after stopping prednisone. My hormone imbalances might be because of something else that was discovered recently.

When I was diagnosed with PMR, nobody ever told me how my cortisol level would be impacted when I took Prednisone for more than a few months.

This plays nicely into the topic, unfortunately.
Who knew that what would make me "feel good" was actually bad, and would then stick me with another problem—that is, the questionable hormonal imbalance.

Super helpful though. Just not sure how to look forward to all of this. My hope is that the Kevzara covers the PMR symptoms and that smart tapering will reactivate my adrenals. Am I being too optimistic? Naïve?