1. < Polymyalgia Rheumatica (PMR)

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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megz | @megz | Dec 30, 2024
In reply to @dadcue ""The medical mob now says the physiological dose is around 5mg (4-6) rather than the previous..." + (show)
@dadcue

"The medical mob now says the physiological dose is around 5mg (4-6) rather than the previous estimation of 7-8, but cortisol levels for individuals vary."

Whatever the physiological dose is, my endocrinologist said I needed to be on "significantly less" to coax my adrenals to respond to a cortisol shortage. I also had to maintain that dose for an "extended period of time." There was no other way.

It wasn't a pleasant year but I didn't have a PMR flare.

Jump to this post

Yes, I understand you had issues with low adrenal function after taking various doses of prednisone for 12 years or so, so what you've done was right for you. There are lots of variables in the lives of individuals. At this stage I have no evidence of adrenal insufficiency, so will keep to the same plan for now.

REPLY
megz | @megz | 6 days ago

Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have started this week reducing to 5.5mg - taken as 4.5mg morning plus 1mg early evening. I previously struggled at 6.5mg and flared at 6mg, so it feels good to be reducing this time with no pain or issues at all.

I've used this tapered reduction since reaching 7mg, and have found it helpful.
Dosage Reduction Schedule:
Week 1 (this week)
5.5 / 6 / 6 / 5.5 / 6 / 6 / 5.5
Week 2
6 / 5.5 / 6 / 5.5 / 6 / 5.5 / 6
Week 3
5.5 / 5.5 / 6 / 5.5 / 5.5 / 6 / 5.5
Week 4
Stay on 5.5, take it easy for the week and monitor for any return of pain.

It's a while since I felt hopeful about recovering from PMR, but hope and cautious optimism are high at the moment.

REPLY
4 replies
rosemargaret | @rosemargaret | 4 days ago
In reply to @megz "Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have..." + (show)
@megz

Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have started this week reducing to 5.5mg - taken as 4.5mg morning plus 1mg early evening. I previously struggled at 6.5mg and flared at 6mg, so it feels good to be reducing this time with no pain or issues at all.

I've used this tapered reduction since reaching 7mg, and have found it helpful.
Dosage Reduction Schedule:
Week 1 (this week)
5.5 / 6 / 6 / 5.5 / 6 / 6 / 5.5
Week 2
6 / 5.5 / 6 / 5.5 / 6 / 5.5 / 6
Week 3
5.5 / 5.5 / 6 / 5.5 / 5.5 / 6 / 5.5
Week 4
Stay on 5.5, take it easy for the week and monitor for any return of pain.

It's a while since I felt hopeful about recovering from PMR, but hope and cautious optimism are high at the moment.

Jump to this post

This was the dosage lowering plan my PCP had me on and I was holding at 3. Sorry I moved on to a rheumatologist that reduces dosages at a much faster level which doesn't work for me. Back to 10 mg. due to pain and flare ups.

REPLY
1 reply
mtr2601 | @mtr2601 | 4 days ago

I'm finding the last few milligrams even more challenging than the drop from 10 to 5mg. It has taken me 10 weeks to get from 2.5mg to 1.5mg. Fatigue and pain in the hips is the main issue but there are days when I think I've got it under control, there is light at the end of the tunnel but you have to walk through a lot of quicksand to get there !!!

REPLY
ropnrose | @ropnrose | 4 days ago
In reply to @rosemargaret "This was the dosage lowering plan my PCP had me on and I was holding at..." + (show)
@rosemargaret

This was the dosage lowering plan my PCP had me on and I was holding at 3. Sorry I moved on to a rheumatologist that reduces dosages at a much faster level which doesn't work for me. Back to 10 mg. due to pain and flare ups.

Jump to this post

I have a rheumatologist who had an aggressive taper schedule for me. After my last flare at 8 mg/day, she now 'suggests' a taper schedule, "as tolerated". I had to go back to 13 mg. I've learned a lot from this group, regarding tapering. I know my body better than her. Good luck.

REPLY
wellsbjt | @wellsbjt | 4 days ago
In reply to @megz "Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have..." + (show)
@megz

Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have started this week reducing to 5.5mg - taken as 4.5mg morning plus 1mg early evening. I previously struggled at 6.5mg and flared at 6mg, so it feels good to be reducing this time with no pain or issues at all.

I've used this tapered reduction since reaching 7mg, and have found it helpful.
Dosage Reduction Schedule:
Week 1 (this week)
5.5 / 6 / 6 / 5.5 / 6 / 6 / 5.5
Week 2
6 / 5.5 / 6 / 5.5 / 6 / 5.5 / 6
Week 3
5.5 / 5.5 / 6 / 5.5 / 5.5 / 6 / 5.5
Week 4
Stay on 5.5, take it easy for the week and monitor for any return of pain.

It's a while since I felt hopeful about recovering from PMR, but hope and cautious optimism are high at the moment.

Jump to this post

Does the early evening split dose affect your sleep? I am trying to taper from 7 mg and your schedule looks more manageable than just dropping by .5 mg each week.

REPLY
1 reply
DadCue | @dadcue | 4 days ago
In reply to @megz "Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have..." + (show)
@megz

Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have started this week reducing to 5.5mg - taken as 4.5mg morning plus 1mg early evening. I previously struggled at 6.5mg and flared at 6mg, so it feels good to be reducing this time with no pain or issues at all.

I've used this tapered reduction since reaching 7mg, and have found it helpful.
Dosage Reduction Schedule:
Week 1 (this week)
5.5 / 6 / 6 / 5.5 / 6 / 6 / 5.5
Week 2
6 / 5.5 / 6 / 5.5 / 6 / 5.5 / 6
Week 3
5.5 / 5.5 / 6 / 5.5 / 5.5 / 6 / 5.5
Week 4
Stay on 5.5, take it easy for the week and monitor for any return of pain.

It's a while since I felt hopeful about recovering from PMR, but hope and cautious optimism are high at the moment.

Jump to this post

Hope and cautious optimism is the best we can do sometimes.

REPLY
megz | @megz | 4 days ago
In reply to @wellsbjt "Does the early evening split dose affect your sleep? I am trying to taper from 7..." + (show)
@wellsbjt

Does the early evening split dose affect your sleep? I am trying to taper from 7 mg and your schedule looks more manageable than just dropping by .5 mg each week.

Jump to this post

No problem with sleep while taking only 1mg in the early evening and no pain at all in the morning, just occasionally very minor morning stiffness or aches.

Reducing by .5mg a week for a reduction of 1mg every 2 weeks is a very fast reduction schedule. My doctor's original reduction schedule was 1mg every 4 - 8wks, and the slow taper I'm doing results in a 1mg reduction every 8wks, at the longer end of the range. I'm happy with that. Doctor now says I can sit on the same dose for a week or so longer if I need to but I haven't done that yet.

REPLY
1 reply
jennyjune | @jennyjune | 4 days ago
In reply to @megz "Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have..." + (show)
@megz

Quite excited about having lowered my lowest effective dose by another .5mg of prednisolone, and have started this week reducing to 5.5mg - taken as 4.5mg morning plus 1mg early evening. I previously struggled at 6.5mg and flared at 6mg, so it feels good to be reducing this time with no pain or issues at all.

I've used this tapered reduction since reaching 7mg, and have found it helpful.
Dosage Reduction Schedule:
Week 1 (this week)
5.5 / 6 / 6 / 5.5 / 6 / 6 / 5.5
Week 2
6 / 5.5 / 6 / 5.5 / 6 / 5.5 / 6
Week 3
5.5 / 5.5 / 6 / 5.5 / 5.5 / 6 / 5.5
Week 4
Stay on 5.5, take it easy for the week and monitor for any return of pain.

It's a while since I felt hopeful about recovering from PMR, but hope and cautious optimism are high at the moment.

Jump to this post

Just wondering how long you have actually been on the prednisone and what was your starting dose.
I was diagnosed with PMR 6mths ago and was on 7.5 but then saw a rheumatologist and was put on 10, also taking sulfasalazine 4 tabs a day, I’ve noticed on this forum that everyone just seems to be on prednisone and no other medication, they hope to have the prednisone gone by March and just on the other meds, they don’t have to be tapered off.

REPLY
3 replies
megz | @megz | 4 days ago
In reply to @jennyjune "Just wondering how long you have actually been on the prednisone and what was your starting..." + (show)
@jennyjune

Just wondering how long you have actually been on the prednisone and what was your starting dose.
I was diagnosed with PMR 6mths ago and was on 7.5 but then saw a rheumatologist and was put on 10, also taking sulfasalazine 4 tabs a day, I’ve noticed on this forum that everyone just seems to be on prednisone and no other medication, they hope to have the prednisone gone by March and just on the other meds, they don’t have to be tapered off.

Jump to this post

Start dose was 15mg in May 2023. 10mths ago after reducing to 6.5/6mg I had my first and only flare, which only settled after going back to 15mg and reducing again. Now reducing to 5.5mg without issue, and I'm hoping not to add more medications with new problems and side effects.

Everyone is different, from dose needed to how long it takes the PMR to resolve, and which medications can be tolerated. I'm on blood thinners for thrombosis, have had heart issues and have latent tuberculosis which means some medications used for PMR can't be taken.

Let us know how you get on with the sulfasalazine. Your experience with it will be of interest to others.

REPLY
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