The lowest effective dose, how is it defined?

I had the same experience when I dropped from 9 (comfortable) to 8 (some pain returned). I went back to 12 for five days and am now back at 9. I think I'll stay here for a couple of weeks and then try again. The "lowest effective dose" seems to change as the PMR slowly changes, so we can creep downward very slowly. It seems to me that reducing swiftly is not worth the pain, and instead I am trying to mitigate the negative effects of prednisone with supplements and exercise.

Thanks for that. Good to not feel so alone on this as my doctor is not very familiar with PMR and was at a loss as to what to do about the returning pain. She suggested I reduce further by our next appointment in 3 1/2wks as I've been sitting on 8mg for a month hoping the pain (mostly in the morning) would resolve. I have no interest in prompting a full-on flare by reducing again yet. She has been open to my suggestions so far, so some well founded reason for a delay would be useful to give her.

How long did it take you to go back to 9mg after the 5 days on 12mg - did you go straight back to it after the 5 days or do it more gradually?

Hi @megz, I agree with @pkalkstein. The lowest effect dose is a rolling target and has more to do with your pain level than the amount of time you spend on prednisone. If you don't take enough, the pain will not be addressed and I suppose if you overdo it the pain will also be addressed. I think that is specifically why my rheumatologist urged me to keep a daily log with my level of pain when waking up and the amount of prednisone I was taking for that day. I believe the average starting dose is 12.5 mg to 25 mg. For both of my occurrences of PMR, I started at 20 mg and was pain free within a few hours of taking the first dose and stayed that way until the morning.

You might find this research helpful:
--- 2015 Recommendations for the management of polymyalgia rheumatica: a European League Against Rheumatism/American College of Rheumatology collaborative initiative: https://ard.bmj.com/content/74/10/1799

It’s a long slow progress, everyone has flare ups when you get on the edge of your lowest dose, hang in there.

Yes John, I record brief notes on the calendar daily and use it at doctor's appointments, currently every month. I don't use a numbered pain level but use words like "pain tolerable", "aches only", "stiff but no pain", "no pain at all".

I have been entirely focused on getting off the 'roids as quickly as possible, but now am more aware that the disease has to run its course, so there must be time allowed for that too. Re-emerging pain is a good educator. I hear medical people say the 4-8wks for each taper is to let the adrenal glands "wake up" with hardly a mention of the importance of giving the disease time to run its course.

I'll have a good read of that paper, thank you.

My rheumatologist originally gave me standing orders for monthly crp and sed rate tests. Both were very high at the onset of my pmr. Any time I've had a flare my crp is elevated, the sed rate elevates but is still in normal limits. I'm due for bloodwork now. My current prednisone dose has greatly reduced hand swelling and pain. The beginning of this year I was down to less than 5 mg, no pain, bloodwork every other month and then a flare. My crp level seems to correlate with pain. Occasionally I've experienced some pain but my crp was normal and I seemed to work through it without increasing the prednisone doae. I was told to decrease 1 mg/month this time. I'm now alternating between 8.5 and 8 mg daily to get down to 8 for 2 weeks and then will try alternating between 8 and 7.5. I'm hoping the diet modifications I'm making will help.

I started at 15 around the same time and just went to 10 this weekend. It may be best to go slow. The schedules I've seen show to go down 1mg every 4-6 weeks and no pain. Going too quickly will force you to go higher.

Yes Vellen, if I'd gone with the slow taper schedule handed to me at the start, I would have been due to drop to 9mg a few days ago rather than to 8mg a month ago as I did. The plan for me to be on prednisolone for up to 2 years, which I did not know till after I had started on it, shocked me and I wanted to do better than that. So I took the directive to reduce to the lowest effective dose in the shortest possible time literally and acted on it.

This is the taper I did and the length of time I stayed on each dose:
15mg - 8 days
12.5mg - 9 days
11.5mg - 10 days
(These first 3 reductions were done quickly because I knew there was a 2-3wk window in the beginning when fairly big reductions could be done without adverse effects)
10mg - 9 days
9mg - 10 days
8mg - been on it for 5 weeks so far

I had slight pain after each reduction which resolved within a week. Sometimes I see-sawed back and forth from the original and new doses a couple of times (in the first few days only) to soften the reduction. It seemed to work.

In hindsight, I should definitely have slowed reductions after the first few weeks of pushing it and especially after reaching 10mg. Dilemma: But how can you know what the lowest effective dose is unless you get breakthrough pain?

I think you have to set your own pain scale for when the dose is not working like it has in the past. For me, when tracking my pain level 0 to 10, if it was greater than 2 (pretty subjective on my part), I didn't taper down to my next lower level and sometimes went back up half of my previous taper so that I had still made some progress with tapering.

My sedimentation rate blood results were high at diagnosis and still high but slightly reduced a week after starting on prednisilone. A week after reaching 8mg when pain had come back, the ESR was in the low normal range. I don't know what it is now, weeks later.

If the pain (tolerable but annoying, worst in the morning) continues till the next doctor's appointment in a few weeks, maybe the ESR needs to be checked again, although pain can apparently occur even with normal ESR levels, as you say. If it is high, I definitely won't be reducing further.