I am afraid the pain will never end.

I take monthly Actemra infusions. I didn't feel any relief for a couple of months. How long have you been at 12 mg.?

"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.

I started at the end of January on 20g of Prednisone and had gotten myself down to 8 mg by April going down 1 mg/week. The pain was just too bad. I bumped back to 10 mg of Prednisone mid July. Started Kevzara mid August. Also bumped again at this point to 12 mg mid August. The pain was really rough making walking, getting up, moving my arms etc very painful. I am sure u know the drill. Anyway, I have been on 12 mg since mid August, which is when I started Kevzara.

Hi, I feel exactly as you do. I am also very active and look ok, so especially my family think I am ok . I am fairly new to PMR only July 2025.
I am currently on 12.5 mg of prednisone going down to 10mg next week so wondering if the pain will change. I also have fatigue and need a nap these days.
This has been such a shock as you are not sure what’s around the corner.
Love reading everyone’s journey as I can relate to some.

Reminder Kevzara can take up to 3 months to work. I would not rush the taper.

Hang in there. I agree with @tweetypie13. Don't rush your taper. I went down 1 mg. every two weeks, until I got to 9 mg. Then, I went down 1 mg. every month. My rheumatologist gives me a guideline for taper, but I listen to my body and adjust accordingly. My taper has been made much easier, as I began Actemra infusions in January. I don't know how, I would have managed without it.

Thank u. I will not. Now, thanks to yours and topnrpse's advice.

Thank u for sharing your experience and the specifics of your taper. I really appreciate it and willing refer to it

Ropnrose, I agree with everything you said.

Havana, I will add I had no pain at all until I went under 9mg.

My rheumatologist only offered Kevzara to help the prednisone reduction and I won't take that. (I have diverticulosis, which is not as bad as diverticulitis but I don't want to take any chances.)

Ropnrose, do you have GCA? Someone mentioned that is only given for GCA not for PMR alone. I'd actually be happy to try that as it has been a struggle getting down to 6.5. Not anxious for the next reduction!!!! But want off!!!

In July 2024, I was diagnosed with PMR and suspected GCA. I had bilateral temporal biopisies done, but they were negative. The report stated that, that didn't necessarily mean I didn't have GCA. I had all the symptoms (except vision issues). I was started on 60 mg. pred. at that time. When my taper got me to 8 mg. in December, I had a flare. My PMR and GCA symptoms returned. That's when I told my rheumatologist that I wanted to try Actemra infusions. She agreed with me.