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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Profile picture for megz @megz

Reducing to 3mg now, and all is well. The only difference I notice recently is that I've lost 5 pounds in weight over the last month without trying even though I gained no weight while on prednisone, and have slept till 11am two days this week. No problem with either of those things. Still keeping as active as I can during the day, though it's a little harder to push myself to do things. No pain and no increase in inflammation. It feels like the end is in sight. 🙂

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I will be reducing to 3 mg in a few days, and am so relieved to hear others are doing this successfully. I have stayed at 3 and a half for several months (I had a shoulder replacement), and now my rheumy wants me to reduce by 1/2 per month. I’m on methotrexate and tolerating it well. Fatigue and OA pain are continuing challenges, but at least the pred side effects are gone.

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Down to 2mg prednisone and everything is good. A few passing minor aches occasionally, usually after physical exertion. I do think keeping active in the yard is helping. Still eating low carb, low oxalate, low lectin and no gluten. Still grounding with bare feet on the ground outside for short times frequently each day. That may be helping too. Plenty of dairy for bones, meat for protein (grass fed and finished) and lots of cruciferous vegies (cabbage, broccoli, brussel sprouts). After this week on 2mg to stabilise, I start the 4 week reduction to 1.5mg next week. Sleeping well, feeling good.

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Profile picture for megz @megz

Down to 2mg prednisone and everything is good. A few passing minor aches occasionally, usually after physical exertion. I do think keeping active in the yard is helping. Still eating low carb, low oxalate, low lectin and no gluten. Still grounding with bare feet on the ground outside for short times frequently each day. That may be helping too. Plenty of dairy for bones, meat for protein (grass fed and finished) and lots of cruciferous vegies (cabbage, broccoli, brussel sprouts). After this week on 2mg to stabilise, I start the 4 week reduction to 1.5mg next week. Sleeping well, feeling good.

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I got down to 2 mg about 9 weeks ago. After a week at that level I started feeling really good, like the prednisone wasn't having any side effects. I didn't notice any more improvements until I got to 0 11 days ago. I started sleeping better and I feel a little better in general. Are you only taking prednisone and no biologic?

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Profile picture for jeff97 @jeff97

I got down to 2 mg about 9 weeks ago. After a week at that level I started feeling really good, like the prednisone wasn't having any side effects. I didn't notice any more improvements until I got to 0 11 days ago. I started sleeping better and I feel a little better in general. Are you only taking prednisone and no biologic?

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Just taking prednisone. Adding another medication to prednisone has always worried me. Another drug with new side effects was something I decided against last year. I don't see anyone talking about getting off their biologic once they start on it, yet the long term effects are unknown. And I have latent tuberculosis - was exposed to it as a teen but never developed the illness - and biologics can make latent TB become active apparently.

I'm feeling pretty good. One problem that started after last year's flare was a stabbing nerve pain down my right leg, but that's improved a lot lately which is a big relief. Like you, I look forward to enjoying more health improvements when I get to 0 pred. Good to hear you're doing well yourself. Fingers crossed for both of us.

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Profile picture for megz @megz

Just taking prednisone. Adding another medication to prednisone has always worried me. Another drug with new side effects was something I decided against last year. I don't see anyone talking about getting off their biologic once they start on it, yet the long term effects are unknown. And I have latent tuberculosis - was exposed to it as a teen but never developed the illness - and biologics can make latent TB become active apparently.

I'm feeling pretty good. One problem that started after last year's flare was a stabbing nerve pain down my right leg, but that's improved a lot lately which is a big relief. Like you, I look forward to enjoying more health improvements when I get to 0 pred. Good to hear you're doing well yourself. Fingers crossed for both of us.

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Have you considered that the stabbing nerve pain may be sciatica--especially if you sit a lot. When this happens to me, I do this psoas stretching version since I have standing balance issues:
To perform the table psoas stretch, follow these steps:
Positioning: Lie on your back on a stable table or bench.
Leg Placement: Allow one leg to hang over the edge of the table, letting it stretch downwards.
2
Hold the Stretch: Keep the position for 20 to 30 seconds, breathing deeply.
1
Repeat: Switch legs and repeat the stretch 2 to 3 times a day for best results.
1

This stretch helps to lengthen and relieve tightness in the psoas muscle.

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I just lowered my pred dosage last Wednesday from 5 mgs to 4mgs w/no issue (yea!!) until yesterday’s surprise pain. Now my right wrist and forearm are aching. Bummer. Dr says I could increase back up to 5 mg & decrease dosage 1 mg a month rather than the every 2 weeks I’ve been doing. Or alternate between 4 & 5 mgs to see how pain goes.
I was so hoping to get off this drug sooner rather than later or at least taper off quickly. I’ve been on it since March2025, at 15mgs. So I’m wondering if I should just accept this bit of pain & stay on 4 mgs. I am also on methotrexate (since May) but I don’t know if that’s any help. Haha.
Anyway so confusing!!

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Profile picture for urusvati @urusvati

Have you considered that the stabbing nerve pain may be sciatica--especially if you sit a lot. When this happens to me, I do this psoas stretching version since I have standing balance issues:
To perform the table psoas stretch, follow these steps:
Positioning: Lie on your back on a stable table or bench.
Leg Placement: Allow one leg to hang over the edge of the table, letting it stretch downwards.
2
Hold the Stretch: Keep the position for 20 to 30 seconds, breathing deeply.
1
Repeat: Switch legs and repeat the stretch 2 to 3 times a day for best results.
1

This stretch helps to lengthen and relieve tightness in the psoas muscle.

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I think you're onto something. I did wonder about sciatica. Since getting Morton's Neuroma in the balls of my feet last year I'm still fairly active, but move much more slowly and carefully and that's caused tight calf muscles. Recently I've been doing calf muscle stretches, pulling the toes forward and holding, and it seems to help a bit.

I'll add your new more targeted stretch, thank you. I hadn't thought about tightness in other muscles too, but that makes sense.

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Profile picture for megz @megz

I think you're onto something. I did wonder about sciatica. Since getting Morton's Neuroma in the balls of my feet last year I'm still fairly active, but move much more slowly and carefully and that's caused tight calf muscles. Recently I've been doing calf muscle stretches, pulling the toes forward and holding, and it seems to help a bit.

I'll add your new more targeted stretch, thank you. I hadn't thought about tightness in other muscles too, but that makes sense.

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I thought of sciatica too when I read your post about the stabbing pain. I routinely do a piriformis stretch to help prevent pain in the butt when sitting. A tight piriformis can also cause sciatica symptoms. Here is a short video showing the stretch I like - https://www.youtube.com/shorts/zhzW4-tq9HM

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Profile picture for jeff97 @jeff97

I thought of sciatica too when I read your post about the stabbing pain. I routinely do a piriformis stretch to help prevent pain in the butt when sitting. A tight piriformis can also cause sciatica symptoms. Here is a short video showing the stretch I like - https://www.youtube.com/shorts/zhzW4-tq9HM

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Very helpful. I did not know about the added rocking motion. Thanks.

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Profile picture for kare1 @kare1

I just lowered my pred dosage last Wednesday from 5 mgs to 4mgs w/no issue (yea!!) until yesterday’s surprise pain. Now my right wrist and forearm are aching. Bummer. Dr says I could increase back up to 5 mg & decrease dosage 1 mg a month rather than the every 2 weeks I’ve been doing. Or alternate between 4 & 5 mgs to see how pain goes.
I was so hoping to get off this drug sooner rather than later or at least taper off quickly. I’ve been on it since March2025, at 15mgs. So I’m wondering if I should just accept this bit of pain & stay on 4 mgs. I am also on methotrexate (since May) but I don’t know if that’s any help. Haha.
Anyway so confusing!!

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If you drop your dose below the level required to eliminate the inflammation from the PMR, then inflammation will build up again and pain will result. The steroids don't cure the PMR, just control the symptoms. And, like you, I don't think methotrexate does much good for the majority of us. So really we are taking the steroids for relief while waiting for the PMR to go away.

The risk is that if you drop the steroids too fast and too low that the level of inflammation that builds up will need an even higher dose of steroids to get rid of it and then you get into a yo-yoing pattern of going up and down. Small cautious steps in reducing dosage are the best way long-term. You are also at the level where your adrenal function needs to kick in and start carrying some of the load naturally so that can cause issues as well because that process can be very slow as well. It is a complex and very confusing illness to manage.

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