PMR and the taper

There is no accurate test to measure a cortisol level while you are still taking Prednisone. You need to be off Prednisone to get a semi accurate cortisol level.

Most doctors don't bother with obtaining a cortisol level because they are hard to interpret. There is a "normal range" for a cortisol level but there are too many factors to consider for interpreting what a normal level is.
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Artificial intelligence says it better than I can:

"While a general "normal range" for cortisol levels exists, interpreting what constitutes a normal level for an individual is complex due to various influencing factors. Cortisol levels naturally fluctuate throughout the day, peaking in the morning and decreasing later in the day. Individual differences, health conditions, medications, and even the time of day the test is taken can all impact cortisol levels, making a single measurement insufficient to determine a truly "normal" level. "

I started at 15mg in 2023 and got it down to 1 in 2024. Shortly thereafter I was back at 7 and have been up and down since then. I had been at 1mg for 3 months but as of today I am back at 5.
Also about 2 months ago my rheumatologist placed me on 400mg hydroxychloroquine per day.
I have yet to see any benefit but I know it is a 3-4 month startup. I see many others have it much worse than me so I will not complain to much.
Thanks for asking.

Being on 1 mg for three months is a good amount of time. It suggests that PMR was in remission. Perhaps your cortisol level wasn't enough to regulate inflammation. What happened when you needed to go back to 7 mg of prednisone?

My endocrinologist explained that my cortisol level needed to rebound before I would be able to taper completely off prednisone. She wouldn't predict how long it would take for that to happen. She only said that I would need to stay on a low dose of prednisone for "as long as it takes."

Hydroxychloroquine seems to control PMR for many people. You really need something to replace Prednisone while waiting for your adrenals to recover. I don't know how people manage to get off Prednisone without some type of "steroid sparing" medication.
https://connect.mayoclinic.org/discussion/any-tips-for-tapering-off-prednisone/

Mike doha e supporting evidence
of hydroxychloroquine helps with PMR.

No ... only anecdotal accounts of what I read on forums like this. I don't have any personal experience with hydroxychloroquine but many people say it works for them.

I find studies like the following interesting.
https://pubmed.ncbi.nlm.nih.gov/27843369/
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Except for being diagnosed with PMR ... I don't know how anyone knows it is really PMR. It would be impossible to exclude all of the other conditions that mimic PMR before diagnosing PMR. A rapid response to Prednisone isn't conclusive evidence because many autoimmune disorders respond rapidly to Prednisone.

Most of the time it seems likely that there might be other conditions in play and rarely do people have an isolated case of PMR. I have multiple autoimmune conditions myself in addition to being diagnosed with PMR. I'm happy that Actemra works for me and I was able to discontinue prednisone.

Anything that works for someone else makes me happy because 12 years on prednisone wasn't good for me. If prednisone works and doesn't cause too many ill effects for people, that makes me happy too.

New to the group. 63 year old male. Diagnosed in April 2025, started Prednisone on May 4, 2025. Just started my tapering from the original 15 mg to 12.5 mg. Spent a month on the original 15 and became pain free over that month of 15 mg. Woke this morning (day 2 of 12.5 ) to stiff shoulders with some light pain. My question is what constitutes a "flare up"? Nobody (including my Dr and ex-patients that I know) can tell me what just constitutes a flair up. How bad does the pain have to be to consider it a flare and to then go back to the previous lowest dose that dealt with it? Does the pain have to be completely gone? 1/2 as bad as the original pain? full on "original pain"? I am very in tune with my body and notice pretty much everything that goes on. Even the area that I had surgery on my hand last October is a kind of barometer for when pain is "up" . That hand gets stiffer. In addition, my dreams become more nightmare-oriented when I am entering into pain. Just how much pain should one expect to deal with when dropping to a lower dose? Thanks for any help that can be sent my way.

Flares are hard to define for PMR. Most people just take more Prednisone for any uptick in pain and call it a flare. I never liked the "flare" terminology because I was never sure what it was. I would simply describe the pain I had which was all the time. I had more pain some days than other days but there was always some pain. The concept of "no pain" was somewhat foreign to me after I was diagnosed with my first autoimmune condition. PMR wasn't my first.

My rheumatologist never referred to flares either. She just wanted to know how much pain I had and checked my inflammation markers to correlate lab values with my pain. She didn't even refer to my condition as PMR very often. Maybe that was because I had multiple autoimmune conditions. She referred to everything as "systemic inflammation with "chronic pain." Her biggest concern was always how much Prednisone I was taking and tried everything she could think of to see if I could reduce my overall cumulative dose without ever expecting me to taper off completely. Maybe that was why i was on Prednisone for 12 years. before I could taper off. My rheumatologist now says I have "refractory PMR." I'm currently being treated with a long term biologic instead of long term Prednisone.
https://www.the-rheumatologist.org/article/how-to-treat-refractory-polymyalgia-rheumatica/
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Once I had an acute onset of excruciating pain. If that wasn't a flare I don't know what was. I must have taken close to 100 mg of Prednisone in 24 hours. I didn't know what else to do. The pain was in my lower back and radiated down my leg to my foot. The large dose of Prednisone relieved the pain so I was thinking it was a flare. I ended up getting an MRI which showed that I had severe spinal stenosis. My rheumatologist said I shouldn't have taken such a large dose of Prednisone. She would have recommended a localized steroid injection instead of systemic oral Prednisone.

Thanks for the info

Thank you Mike for that reflection on "flares". Your story is another example of how very different this disease is for every person and hence the difficulty with treating it. I will keep your words with me as I proceed on the journey. Strangely, in some ways I hope I fail and have "flares" as that is the only way I am able to prove to insurance that I can use a adjuvant such as Kevzara. As a first line defense, the insurance and the medical establishment does not recommend it. But I am sure that that too has its drawbacks. Time will tell. Thanks again. Peter

I had another autoimmune condition that was characterized by recurring flares. For flares of uveitis my routine was 60 mg of Prednisone and I would taper off in a month. I can safely say I had more than 30 distinct flares of uveitis because remission was achieved with a short term burst of Prednisone. Uveitis can be chronic but my flares never were. Remission was easy to achieve and I would be off Prednisone for a year or so until the next flare. I knew when I had a flare of uveitis but my ophthalmologist had to verify it. The routine was to take the Prednisone and taper off. My follow-up visit was a month later when my ophthalmologist verified that my eye was clear and quiet and the inflammation was gone.
https://www.mayoclinic.org/diseases-conditions/uveitis/symptoms-causes/syc-20378734
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After Prednisone was started for PMR ... I couldn't taper off again for 12 years. The approach to PMR is to start Prednisone and "wait until PMR burns itself out."

People with PMR take prednisone for years instead of a month or two. It is hard to know when "remission" is achieved . Remission is elusive for PMR.

Waiting for fire to burn itself out isn't treating the fire or preventing it. I assume that is where the terminology of a "flare" comes from. It is akin to something burning or inflamed.