1. < Polymyalgia Rheumatica (PMR)

Tapering off of Prednisone

Posted by e @epvb, Mar 27, 2017

I am currently on 20 mg prednisone after tapering down from 40 mg which I was on for 2 weeks. I have been directed to taper down again next week to 10 mg. I am experiencing terrible headaches lasting days at a time as well as neck pain and insomnia. Has anyone found any relief or remedies for headache/neck pain? Thank you.

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michwest | @michwest | Jan 2, 2023
In reply to @johnbishop "Hi @michwest, When I have an increase of pain like you mention, I also didn't want..." + (show)
@johnbishop

Hi @michwest, When I have an increase of pain like you mention, I also didn't want to go back to the previous dose. It sounds like you have 2.5 mg tablets. Do you also have 1 mg tablets of prednisone? It you dropped from 15 to 12.5 and felt an increase of pain, you might try adding 1 mg to your daily dose or splitting the 2.5 tablet and going up half of the previous dose. Then if the pain goes away, you can taper from there. I kept a daily log of my level of pain when I got up in the morning along with the dose I was taking that day. If it was time to taper but my pain level was above a 2, I delayed the taper or I bumped it up a little trying to stay lower and not go back to the previous dosage of prednisone.

Not sure if you've seen this discusssion but you might find it helpful:
-- PMR Dosages and Managing Symptoms:
https://connect.mayoclinic.org/discussion/pmr-dosages/

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Hi @johnbishop - thank you so much for your reply and advice and link to the other discussion which is also very helpful. I will have my Rheumatologist prescribe 1 mg tabs - at the moment I only have 5mg until I see her in early Feb.
I think the idea of keeping a pain log is a really good idea thank you.
Part of me thinks I can just manage with the pain at a 2 or 3. Since I started developing all the symptoms in late July I have not been able to kneel down all the way (never a problem before) I can kneel a bit better after a few hours on prednisone but I feel like I will never be able to kneel properly again because of pain behind my knees. All of that to ask am I settling by not getting to 100% pain free? I’m content to have a level of pain and just deal with it but I don’t want to slow complete remission down either so I’m just questioning myself on dosage all the time.
I really like the idea of tapering by 1mg though - which is the intention I believe once I get to 10mg - but having the option before I get to that dose is a great idea.
Thank you so much John - this group has been incredibly helpful and informative. I appreciate the time you give to answer each of us!

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mahubbard | @mahubbard | Jan 2, 2023

I was diagnosed with PMR in November 22. I eventually got in to see a Rheumatologist after getting bad advice from my PCP (who started me on 60mg Prednisone which promptly put me in rapid Afib)
My Rheumatologist placed me on a much lower dose and I am weaning 1 mg a month. I am presently at 5 mg. I have had occasional PMR discomfort but only 1-2 on pain scale, which I can deal with.
I agree with TillySam. The UK site HealthUnlocked is a great place to get PMR info.

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suetex | @suetex | Jan 2, 2023

As I read posts that come from people who are on high doses pf pred and are having no reduction in pain (high = anything over 30mg), I really have to wonder about individual adrenal activity. I think of my husband who is, I suspect a high adrenaline output person as opposed to myself, who is low. (I have the labs that show this.) And how differently we react to prednisone. And also, maybe these people don't have PMR but something else? It realy introduces a lot of questions. One size certainly does not seem to fit all, it seems.

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npostusa | @npostusa | Jan 2, 2023
In reply to @michwest "I am 55 was diagnosed at beginning of November 2022 - started at 15mg prednisone had..." + (show)
@michwest

I am 55 was diagnosed at beginning of November 2022 - started at 15mg prednisone had to go up to 20mg then back down to 15mg. I am at 12.5 mg now but pain creeping back in mostly in shoulders/neck and behind my knees. I really don’t want to go back up to 15mg if I don’t have to. I am meant to go down to 10mg this week but my Rheumatologist is letting me go with how I feel pain wise. I have had some side effects with the higher dose of prednisone and also just diagnosed with osteoporosis which was a big surprise for my specialist and I as I am (or have been) very fit, healthy, no osteoporosis in my family…. So now have to have an infusion to strengthen my bones. I also have started getting headaches and not sure why…. So if anyone else has just tried to battle through the pain creeping back and keep with the tapering I’d love to hear your story. Thanks!

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When I have been tapering off, it is usually one mg at a time. Currently I just went from 4 to 3, and i am feeling the effects of the change. I started at 40 a year and a half ago, and almost every time I went down there was a terrible transition. I would not feel great for about 4 days and then I would start leveling off - I hope this helps you?

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2 replies
christi48 | @christi48 | Jan 2, 2023
In reply to @analog "Not sure if that was directed at me, but saying this isn't a race comes off..." + (show)
@analog

Not sure if that was directed at me, but saying this isn't a race comes off a bit patronizing and isn't particularly helpful. I'm not trying to be unpleasant at all, but of COURSE it's not a race - however, balancing the negatives of pred with the incredible negatives of PMR is different for everyone and we all have to figure out what that balance is - hopefully with the specific experience-based advice from those that have been dealing with this longer than those of us who are just learning. As I will share my experiences for others to hopefully get something out of.

That said, per my rheumatologist I'd been tapering from 40 mg at the reduction rate of 5 mg per month. So a month at 40, a month at 35. At 30, with no change in pain levels, I decided to try dropping 5 mg after 2 weeks instead of 4. Which is why I asked the other person here that had tapered from 60 what their rate was.

Again, we all have to apply these data to our own situation. No one knows, from a post, my age, weight, pain level, experience or anything else; I have those data and need to try my best to contour my treatment and taper to those factors. My hope is to get help and learn from the experiences of others as I do.

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I'm using the tapering schedule I saw here or at HealthUnlocked, which decreases the dose by 1 mg./month, and so far am having very good luck with that plan. I did start with a 5mg. initial dose so I know that is much lower than many others are dealing with, but just wanted to share that this ds routine is working for me so far. Best wishes to everyone dealing with this disease.

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michwest | @michwest | Jan 2, 2023
In reply to @npostusa "When I have been tapering off, it is usually one mg at a time. Currently I..." + (show)
@npostusa

When I have been tapering off, it is usually one mg at a time. Currently I just went from 4 to 3, and i am feeling the effects of the change. I started at 40 a year and a half ago, and almost every time I went down there was a terrible transition. I would not feel great for about 4 days and then I would start leveling off - I hope this helps you?

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Thank you! The specialist is planning to take me down by 1 mg once I get to 10mg - I’m meant to go to 10mg from 12.5 this week but the pain is coming back at the 12.5 dose so I don’t think I can try tapering more at this point. I will def start going down by 1mg - thank you.

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annettetompkins | @annettetompkins | Jan 3, 2023
In reply to @npostusa "When I have been tapering off, it is usually one mg at a time. Currently I..." + (show)
@npostusa

When I have been tapering off, it is usually one mg at a time. Currently I just went from 4 to 3, and i am feeling the effects of the change. I started at 40 a year and a half ago, and almost every time I went down there was a terrible transition. I would not feel great for about 4 days and then I would start leveling off - I hope this helps you?

Jump to this post

Hello, I am exactly where you are and had great success tapering 1 mg at a time. Three months ago I went from 3 mg to 2 mg and immediately had a flare up. It took going to 4 mg to get it under control, and now I am at 3 mg again. In order to get to 2 mg once more, I plan to try 2.5 mg in a couple of weeks. As an aside, my cat is taking 1 mg of prednisone a day for an allergy to gnat bites, and I'm looking at her and thinking, "If she can do it, I can too!"

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1 reply
sharonanng | @sharonanng | Jan 3, 2023

I am currently on 7.5 mg and have been tapering by .5 mg every two weeks. When I previously tapered by 1 mg I had a flare up. This tapering by .5 has every two weeks has been working for me for two months now.

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npostusa | @npostusa | Jan 3, 2023
In reply to @annettetompkins "Hello, I am exactly where you are and had great success tapering 1 mg at a..." + (show)
@annettetompkins

Hello, I am exactly where you are and had great success tapering 1 mg at a time. Three months ago I went from 3 mg to 2 mg and immediately had a flare up. It took going to 4 mg to get it under control, and now I am at 3 mg again. In order to get to 2 mg once more, I plan to try 2.5 mg in a couple of weeks. As an aside, my cat is taking 1 mg of prednisone a day for an allergy to gnat bites, and I'm looking at her and thinking, "If she can do it, I can too!"

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Last year I went from 11 to 7 fairly rapidly, but then my rheumatologist suggest we slow it down, and that has worked fairly well. Nevertheless, what has gotten me is the initial tapering - the drop has almost impacted me every time in one way or another. Once I get used to it, takes about 4 days, I am able to proceed without issue. Yay for your kitty - I hate prednisone, but it does work.

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bigobrad | @bigobrad | Jan 22, 2023

I was on 40mg for 2 months because if covid. I tapered 5mg every 4 days down to 20mg and 2.5 every 3 says to 10. It has tore up my stomach and reaied my blood pressure. Having a lot of withdrawal symtoms. Don't want to go back up but because of my stomach not sure what to do

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