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I am afraid the pain will never end.
Polymyalgia Rheumatica (PMR) | Last Active: Sep 12, 2025 | Replies (71)Comment receiving replies
Again, thank you! Where I am getting confused, tho, is I thought that the pain was part of the adrenal glands getting fired up and in working order again. That pushing thought the pain is what it would take to jump start the adrenals, otherwise they would be chronic under performers, so to speak... I do apologize for taking up so much of your time and effort, but it is a life line.
Replies to "Again, thank you! Where I am getting confused, tho, is I thought that the pain was..."
I am a believer in the biological Kevzara. I was stuck at 8-9 mg prednisone and this got me past the speed bump.
Medicare and my supplemental AARP coverall all of it except the first $2000.00 per year. (That’s my AARP deductible). Good news, I don’t pay for any other prescriptions for the year.
Also, prior to Kevzara, I found good relief with Tylenol for Arthritis as a supplement. My Rehumy recommended it.
Yes, I was a mess at times, had to be to,d many times, not to overdue it (I figured I could fight thru, no). At this point remind yourself, it’s ok to not be on top of your game.
"I thought that the pain was part of the adrenal glands getting fired up and in working order again."
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I think you are right but I never thought about it this way. I didn't know why it hurt when my cortisol level was low. I asked artificial intelligence the following question: Why does a low cortisol level cause pain?
The response was simple enough.
"Low cortisol levels can cause pain because cortisol is a potent anti-inflammatory hormone, and insufficient levels lead to unregulated inflammation, which in turn amplifies pain signals. This creates a cycle where chronic pain and stress lead to impaired cortisol regulation, which further promotes inflammation and exacerbates the pain. Additionally, low cortisol can negatively affect the nervous system's ability to modulate pain, disrupt hormonal pain control pathways, and reduce the effectiveness of pain medications, contributing to persistent pain."
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I have had a long held belief that treatment with Prednisone created a self perpetuating cycle of inflammation and pain. The net result of adrenal suppression which Prednisone causes seems to be pain. The problem being how long it takes to recover adrenal function after the adrenals are suppressed for a long time.
I didn't know there were hormonal pain control pathways too unless that means inflammation pathways.
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Pushing through "increasing pain" while continuing a taper probably isn't a good idea.
I believe what happens more often is that people immediately increase their prednisone dose for any uptick in pain. Each new pain should be investigated because it might not be PMR. However, doing another investigation isn't always practical after PMR is diagnosed.
Much of my pain through the years wasn't anything like my original PMR symptoms. I would complain to my rheumatoloist that I thought PMR slipped out the back door and the treatment left me in a world of hurt. She seemed to understand but it still meant I needed to take prednisone.
I understand wanting to be "pain free" but perhaps that won't facilitate tapering off prednisone. It is more about accepting "tolerable pain" vs "no pain." The "fear of pain" sometimes controlled me more than the pain. Does that makes sense?
I'm not the best person to tell anyone how to taper off prednisone since I took it for 12 years for PMR. I'm in awe of people who are able to taper off prednisone sooner than I did. However, the experience with Prednisone I had before PMR was diagnosed was that I could routinely taper off prednisone going from 60 mg to zero in a month or two. My ophthalmologist who was treating uveitis said I was "skilled" at doing Prednisone tapers. I had a lot of practice treating flares of uveitis which can also cause vision loss. The only difference was "short term" vs "long term" prednisone use.
In spite of 12 years on prednisone ... I was able to taper off. In some ways it was harder for me to taper off prednisone after such a long time. The biologic I now take made it much easier for sure. The other thing that helped me was when I was told that I should NOT taper at all when I was at 3 mg. It was hard to resist the temptation to increase my prednisone dose but the endocrinologist said to only increase my dose when it was "absolutely necessary."
The difficulty was knowing if it was necessary or not because it wasn't like having "no pain." I had to stay on 3 mg for six months until my cortisol level improved. Six months wasn't a "predetermined" length of time. My endocrinologist actually said "as long as it takes" for my cortisol level to improve.