The lowest effective dose, how is it defined?

Posted by megz @megz, Aug 6, 2023

Since starting on 15mg of prednisolone for PMR on 10th May (12wks ago), my sole focus has been to "reduce to the lowest effective dose in the shortest possible time" as per the drug company's directive to minimise side effects and reduce the overall cumulative dosage.

I'm now at 8mg and the pain has returned after practically no pain, It's at tolerable levels but disappointing after having been pain free. I assume I've reached the lowest effective dose, or maybe overshot it by 1mg by reducing so quickly. So what is an "effective" dose?

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@johnbishop

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.

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I would certainly be very deflated by the idea of increasing back to the previous dose again. It would feel like a backward step, so a halfway increase may help, psychologically most of all.

The new dilemma is whether to settle for some level of morning pain from now on or to hold to the plan of being painfree as I reduce, apart from minor short term pain on each reduction which I can accept. Is ongoing morning pain (even if at tolerable levels) inevitable? At this stage, I hope not.

So many dilemmas. Thank you all for listening and offering helpful advice and experiences. I really appreciate having found this forum to help wade through the process.

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@megz

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?

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I had two 10 mg tablets left, so I took those for two days, then back to 9, where I seem to be doing OK. Just feeling my way through this maze.

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@pkalkstein

I had two 10 mg tablets left, so I took those for two days, then back to 9, where I seem to be doing OK. Just feeling my way through this maze.

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Aha. That's interesting that it took so little to get back to painfree. I'll try similar to what worked for you and try to land on 8.5mg instead of 9. I have three weeks before the doc's appointment to try it out. She may not be happy about me making a slight increase instead of decrease, but will have to settle for the explanation. Going to lift to 9.5mg for two days from tomorrow and see how I go.

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I had an appt with my rheumatologist yesterday. It was like a breath of fresh air. I started at 20 mg in Dec and got stuck at 8 and then went down to 7.5 anyway and was not only stuck but at an uncomfortable level of pain.
He said he’s baffled by the rush to taper down quickly. That the disease runs its own course. That on the average it takes 18 months to get below 5 mg a day comfortably. The first 6 months the goal should be 10-20 mg. The 2nd 6 months it should be 8-10 mg and then tapering down to 2.5-5 mg a day until it becomes feasible, if it does, to stop altogether.
I happily went back up to 10 this morning per his instructions and my pain level has dropped.
I’ll be going down to 9 mg, again per his instructions, in 8 days.
His attitude - why suffer unnecessarily? Some people have harmful side effects and should find a different alternative but most of us have minor, often aesthetic, side effects that is offset by relief from pain, return to mobility and functioning.

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An "effective dose" takes into account a variety of factors. It isn't only about pain. Even if it was only about pain --- the amount of pain people tolerate varies widely. I like to think I can tolerate pain. Some days I just need to do something about the pain more than other days.

My rheumatologist gave me some guidelines to follow but nothing was set in stone. The principal she went by was that I should find a "stable dose" of prednisone that worked for me. She didn't want me to abruptly change my dose without a good reason and she wanted to be included in the decision making.

She said adjusting my dose should be done in smaller increments especially when under 10 mg. Going up or down by 1 mg was okay as long as the overall trend was down. If the trend was going up than that caused her some concern but she didn't make me feel guilty. She just wanted to investigate what else might be going on.

There wasn't a set period of time when I had to be on 0 mg. She said treating PMR would likely be a long process. Maintaining a stable dose was most important but she expected it would be years before I could taper off. It ended up being 12 years.

After about 2 years my rheumatologist starting introducing other medications to get my prednisone dose lower. Some of those other medications had varying degrees of success too.

Everyone has a different kind of maze in terms of underlying health conditions, side effects, pain tolerance just to name a few of the many factors involved.

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My dr had me at 15 for 2 weeks then to 12.5. Within 3 days, he was out on baby leave and I was in major pain. His assistant tried to convince me to tough it out and I told her no and went back up to 15 for another 2 weeks, then back down to 12.5 with no prolem. His cover dr tried to get me down to 10 after 2 more weeks not knowing the history so there was that to sort out. Then he came back apparently with baby brain and that's what I'm dealing with now. Yes, I'm considering switching to another dr in the same clinic... the only clinic in town.

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@pkalkstein

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.

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Try titrating down by .5 milligrams. That worked well for me.

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This is something I would love to do that once I'm at at 10mg but do need the doctor to fill 1 or 2mg in order to do so. It's tough to do from 11.25 with 5mg pills.

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@alissahe

I had an appt with my rheumatologist yesterday. It was like a breath of fresh air. I started at 20 mg in Dec and got stuck at 8 and then went down to 7.5 anyway and was not only stuck but at an uncomfortable level of pain.
He said he’s baffled by the rush to taper down quickly. That the disease runs its own course. That on the average it takes 18 months to get below 5 mg a day comfortably. The first 6 months the goal should be 10-20 mg. The 2nd 6 months it should be 8-10 mg and then tapering down to 2.5-5 mg a day until it becomes feasible, if it does, to stop altogether.
I happily went back up to 10 this morning per his instructions and my pain level has dropped.
I’ll be going down to 9 mg, again per his instructions, in 8 days.
His attitude - why suffer unnecessarily? Some people have harmful side effects and should find a different alternative but most of us have minor, often aesthetic, side effects that is offset by relief from pain, return to mobility and functioning.

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But DOES it run its own course? Does it improve? Does it release its grip on you at some point?

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Yes. It's a matter of controlling the inflammation (pain) to avoid getting GCA (Giant Cell Arteitis). Then tapering slowly while the body adjusts. Your doctor should explain this. Although 95% of what I've learned about PMR, GCA, and tapering has been from this forum and the internet.

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