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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@dadcue

I think a person's weight should be considered. I'm not sure how often weight is considered.

My rheumatologist made some recommendations to me. Mostly she just wanted me to find a "stable dose" that worked for me. She then wanted me to stay at that dose for a month or two before trying to taper. Everything depended on my symptoms.

I'm a big guy so she said 35 mg wasn't that high of a dose for me. Plus, I took prednisone for years at higher doses for other autoimmune disorders before PMR was diagnosed. I had some tolerance for high doses of prednisone. Unfortunately my tolerance dwindled the longer I took prednisone for PMR.

Before PMR was diagnosed, I was always able to taper off quickly.

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I think height/weight should always be considered with any medication. I was average h/w and now skinny with the stress of being ill. I tend to lose rather than gain. I've probably lost a good 30-35 lbs or more since the start of this. It doesn't help with the fast heart rate either. Starting on 15mg on 6/23, I went from barely able to walk or turn over in bed to being pain free within hours. Now I'm on 11.25mg (split daily) with no pain from PMR. I'll give this doseage a month and try 10 then go down .5 monthly from there. That's the plan anyway.
Good news, my doctor is waiving my jury duty. So stupid a judge deemed me disabled in 2001 yet I get called for jury duty? Make it make sense.

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@freeme

Mary- This last spring, I would hsve described my pain as a 20 on a 10 point scale and was ready to cut off my arms or jump off a roof. For six to eight weeks, i have felt very good and am back to my old self. I am ecstatic that I can get in and out of the bathtub so easily as I love baths. I have recently gone to 5 mg and have had no problems titrating down. Late June my crp was down to about 10. Assume it is even lower now. The sed rate started at 20/high normal and in late June was 6. Will see what happens but I am very encouraged.

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I wish you well and pray for all of us to get past this most unpleasant condition.

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@vellen

I think height/weight should always be considered with any medication. I was average h/w and now skinny with the stress of being ill. I tend to lose rather than gain. I've probably lost a good 30-35 lbs or more since the start of this. It doesn't help with the fast heart rate either. Starting on 15mg on 6/23, I went from barely able to walk or turn over in bed to being pain free within hours. Now I'm on 11.25mg (split daily) with no pain from PMR. I'll give this doseage a month and try 10 then go down .5 monthly from there. That's the plan anyway.
Good news, my doctor is waiving my jury duty. So stupid a judge deemed me disabled in 2001 yet I get called for jury duty? Make it make sense.

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Good to hear your current reduction is going well.
My current rise of 1.5mg per day (morning dose up from 6 to 7mg, bedtime dose up from 2 to 2.5mg) has made no difference in pain reduction yet but it's been only two days. I'll see how I am in the morning and continue another day or two if needed before reducing to 8.5mg, half a mg higher than the 8mg dose that caused pain to start.

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@megz

Good to hear your current reduction is going well.
My current rise of 1.5mg per day (morning dose up from 6 to 7mg, bedtime dose up from 2 to 2.5mg) has made no difference in pain reduction yet but it's been only two days. I'll see how I am in the morning and continue another day or two if needed before reducing to 8.5mg, half a mg higher than the 8mg dose that caused pain to start.

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Oh man, I'm sorry to hear that. Is your pain relieved at all with gentle stretching?

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@vellen

Oh man, I'm sorry to hear that. Is your pain relieved at all with gentle stretching?

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Thanks Vellen. I haven't had a return of bad pain, just a return of pain - probably 2-3/10 on John's pain scale once I dropped to 8mg, that I wanted to resolve before going on with further reductions to avoid a flare. The lift of 1.5mg for 3 days seems to be helping this morning. Slight pain only, probably 1/10. So I'll continue with the extra 1.5 for another day or two before dropping back to 8.5 or 9mg again once the pain is gone.

I do get outside frequently during the day to do small jobs in the garden to keep moving, and do several gentle exercises every day to help with bone strength and muscle loss.

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@dadcue

Me too! I definitely wasn't in that cluster.

"Treat to target" means something slightly different to me. I was treated with prednisone for a really long time both before PMR and after PMR was diagnosed. Nothing ever changed about "managing my symptoms" with prednisone

Eventually I got off prednisone with help from another medication. That would not have been possible for me without the other medication. I think other treatment options targeted at the inflammation mechanism involved rather than managing the symptoms with prednisone.

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I’m 8 years on prednisone now and looking at alternatives. Would you mind sharing what the other medication is that you switched to? And, when you started titrating off Prednisone what was your daily dose?

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@magluchi

I’m 8 years on prednisone now and looking at alternatives. Would you mind sharing what the other medication is that you switched to? And, when you started titrating off Prednisone what was your daily dose?

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A biologic called Actemra (tocilizumab) was prescribed to me for PMR. However it isn't FDA approved for PMR. I was treated with prednisone for 12 years. The lowest dose of prednisone I could maintain was 10 mg before Actemra was tried.

A similar biologic called Kevzara (sarilumab) was recently FDA approved for PMR.
https://www.pharmacytimes.com/view/fda-approves-sarilumab-for-adults-with-polymyalgia-rheumatica

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After a week on 9.5mg (up from 8mg where some pain had returned and not resolved after a month on it), my pain level is now very low - just a couple of joints with morning pain twinges and sore upper arm muscles.

So I dropped back to 9mg yesterday, my last effective dose. I don't feel at all confident about dropping back by 1mg to 8.5mg as I had planned and will sit on the 9mg for a month to stabilise the reduced pain. Doctor's appointment in two weeks and I hope she agrees with what I have done. No choice really, from my point of view.

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There are so many strategies to tapering. Tapering by one half mg works for me but grafually. I am at 8 mg right now for two weeks. Then I'll alternate between 7.5 and 8 for a week and then drop to 7. My problem has been tapering when I get below 5 mg. I think my pmr is in remission. I have developed some sort of inflammatory arthritis in my hands, possibly OA/cppd. I was at 2 mg and went back up to 10. My rhematologist wants me to take methotrexate but I am just too nervous about taking it.

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@pmrsuzie

There are so many strategies to tapering. Tapering by one half mg works for me but grafually. I am at 8 mg right now for two weeks. Then I'll alternate between 7.5 and 8 for a week and then drop to 7. My problem has been tapering when I get below 5 mg. I think my pmr is in remission. I have developed some sort of inflammatory arthritis in my hands, possibly OA/cppd. I was at 2 mg and went back up to 10. My rhematologist wants me to take methotrexate but I am just too nervous about taking it.

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That's interesting @pmrsuzie
It seems like 5mg may be your lowest effective dose? Would it be best to sit on that dose for a while longer to stabilise things and take things more slowly, or did you kept reducing beyond that at the same rate? I'm wondering if there is a way to reduce the necessity of keeping going up and down.

Staying on that lowest effective dose would reduce the cumulative dose, at least. I'm hoping to learn from people who have tried different things, as you seem to have done. Was it your doctor who pushed you to keep reducing beyond 5mg, or did you decide on the reduction schedule yourself?

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