1. < Polymyalgia Rheumatica (PMR)

Any Tips For Tapering Off Prednisone?

Posted by hopeinal @hopeinal, Aug 26 12:19pm

This is my third attempt to taper off of Prednisone or at least down to about 4 mg since my rheumatologist said that I wouldn't have all of these gruesome side effects at that dose and could stay on it for life if necessary. The thing is that as soon as I get down to 7 mg I start to flare. Today is my 3rd day on 7 mg and my shoulders and lower back are so stiff and painful it hurts to move.

I'm really discouraged. Have followed the taper schedule my rheumie gave me and stayed at each dose for 2 weeks before dropping down another mg. Any tips or advice on how to taper without having a flare would be much appreciated.

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

hopeinal | @hopeinal | Aug 28 8:44am
In reply to @jlo2252 "@marymckeith Where are you having pain? PMR affects larger muscle areas like neck, shoulders, upper back,..." + (show)
@jlo2252

@marymckeith
Where are you having pain? PMR affects larger muscle areas like neck, shoulders, upper back, upper arms and hips. RA or any other inflammatory arthritis affects smaller joints like in the hands, feet and knees….

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My pain is all in the PMR range. I was tested for RA and don't have it. I do have Sjogren's though.

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1 reply
hopeinal | @hopeinal | Aug 28 8:48am
In reply to @dadcue "Yes .. a fast response to prednisone is "one of the defining characteristics" of PMR. However..." + (show)
@dadcue

Yes .. a fast response to prednisone is "one of the defining characteristics" of PMR. However a fast response to prednisone is not a "defining diagnosis" of PMR.

There are literally hundreds if not thousands of "diagnostic entities" that respond to prednisone.

If a person's symptoms don't respond to prednisone then an alternative diagnosis needs to be considered.

However, the reverse is not true. You can't conclude it is PMR because a patient's symptoms go away when they take prednisone.
https://www.webmd.com/drugs/2/drug-6007-9383/prednisone-oral/prednisone-oral/details

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That's just what my rheumatologist told me. I'm reasonably certain I didn't misunderstand him because I was a nurse for 42 years and am fairly adept at listening to doctors. lol Also, I had the classic morning stiffness where I was locked up to the point that I couldn't move without screaming in pain when I woke up every morning, along with checking all of the other boxes for PMR.

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jlo2252 | @jlo2252 | Aug 28 8:49am
In reply to @dadcue "Yes .. a fast response to prednisone is "one of the defining characteristics" of PMR. However..." + (show)
@dadcue

Yes .. a fast response to prednisone is "one of the defining characteristics" of PMR. However a fast response to prednisone is not a "defining diagnosis" of PMR.

There are literally hundreds if not thousands of "diagnostic entities" that respond to prednisone.

If a person's symptoms don't respond to prednisone then an alternative diagnosis needs to be considered.

However, the reverse is not true. You can't conclude it is PMR because a patient's symptoms go away when they take prednisone.
https://www.webmd.com/drugs/2/drug-6007-9383/prednisone-oral/prednisone-oral/details

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@dadcue
I agree with you about the quick response to prednisone. I had the same quick response to prednisone when I had PMR and also when I had a flare of my arthritis!

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1 reply
hopeinal | @hopeinal | Aug 28 8:51am
In reply to @jlo2252 "@hopeinal Hello, so sorry you are having this problem with prednisone tapering! Maybe your doctor needs..." + (show)
@jlo2252

@hopeinal
Hello, so sorry you are having this problem with prednisone tapering! Maybe your doctor needs to slow it down more— like be on each dose a month or two? Has he discussed putting you on Actemra? It does seem to help patients wean off prednisone for good!
Best wishes on your journey!

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My rheumatologist moved back to Florida but he discussed trying me on Kevzara before he left. I'm planning to ask my PCP about it at my next checkup.

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hopeinal | @hopeinal | Aug 28 8:54am
In reply to @besmith57 "I have been on 4mg of prednisone for a couple of weeks. Also, the kevzara injections..." + (show)
@besmith57

I have been on 4mg of prednisone for a couple of weeks. Also, the kevzara
injections too. I'm going to wean to 3.5 mg today. Wish me luck! This site is so informative!

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Best of luck! Is Kevzara once weekly or every day? I'm on Mounjaro once a week now for my blood sugar, lowest dose, plus two insulin pens. Starting to feel like a pincushion! lol

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jlo2252 | @jlo2252 | Aug 28 9:00am
In reply to @hopeinal "My pain is all in the PMR range. I was tested for RA and don't have..." + (show)
@hopeinal

My pain is all in the PMR range. I was tested for RA and don't have it. I do have Sjogren's though.

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@hopeinal
Oh no! Sjogrens can also cause you joint pain.
I can sympathize, I have PMR and reactive arthritis—it is no fun. When I flare with the arthritis it’s usually either in my hands or feet, in which case I can’t walk the pain is so bad.

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1 reply
andirae | @andirae | Aug 28 9:10am
In reply to @besmith57 "I have been on 4mg of prednisone for a couple of weeks. Also, the kevzara injections..." + (show)
@besmith57

I have been on 4mg of prednisone for a couple of weeks. Also, the kevzara
injections too. I'm going to wean to 3.5 mg today. Wish me luck! This site is so informative!

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How long on kevzara? How long before you noticed it helped?

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1 reply
DadCue | @dadcue | Aug 28 9:40am
In reply to @jlo2252 "@dadcue I agree with you about the quick response to prednisone. I had the same quick..." + (show)
@jlo2252

@dadcue
I agree with you about the quick response to prednisone. I had the same quick response to prednisone when I had PMR and also when I had a flare of my arthritis!

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Yes ... reactive arthritis (ReA) responds extremely well to Prednisone but there are better options.

RA responds well to prednisone too but chronic conditions like RA usually aren't treated with long term Prednisone. If they learned anything from the historical treatment of RA with Prednisone is that it came with many side effects.
https://www.sciencedirect.com/science/article/abs/pii/S0049017220302912

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1 reply
jlo2252 | @jlo2252 | Aug 28 10:15am
In reply to @dadcue "Yes ... reactive arthritis (ReA) responds extremely well to Prednisone but there are better options. RA..." + (show)
@dadcue

Yes ... reactive arthritis (ReA) responds extremely well to Prednisone but there are better options.

RA responds well to prednisone too but chronic conditions like RA usually aren't treated with long term Prednisone. If they learned anything from the historical treatment of RA with Prednisone is that it came with many side effects.
https://www.sciencedirect.com/science/article/abs/pii/S0049017220302912

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True…when I have had flares of reactive arthritis I have been given other meds as well.
Really depends on where the flare is….in my hands I usually only need short term prednisone for swelling and pain. In my feet and ankles the doctors usually give me another med since I usually cannot walk ☹️ and it usually involves a little longer treatment. This latter type of flare has only happened once.

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marymckeith | @marymckeith | Aug 28 10:21am

unfortunately it is pretty much everywhere. Mostly upper arms, shoulders. hips, legs. Thanks for info. I guess it fits PMR the most.

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