Prednisone and Pain

Posted by keelin @keelin, Oct 29, 2022

Am I the only one that found the prednisone did NOTHING for the pain? I am 6 months into this nightmare and am slowly taking myself OFF prednisone entirely. I had horrible side effects, and it seems that everyone e else I read about has total relief from pain while on the prednisone. ?
The only thing that helps slightly is an anti inflammatory. But of course I am warned about stroke, heart attack, and kidney problems taking it long term.

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

@mnmom1

I have started keeping track of my pain. Just seems like the prednisone doesn't hold my pain for a full 24 hours. Thanks for the tips. I will call a pharmacist and check this out and let you know what I find out. I don’t see a Rhuematologist until March at Mayo in la crosse so will have check that out as I need to get that going.

Thank you!

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I talked to a pharmacist today and she said it was ok to split the prednisone dose up. Just need to be careful that I don’t take it too late in the day. So I’m going to try my prednisone 10mg with breakfast and the other 5 mg four hours later. If that doesn’t work I will need to contact my Dr to see if I need a prednisone dose increase.

Thanks

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@jerseyjames

Hi John. This is a follow-up to my earlier posts. I saw my rheumatologist yesterday and explained that the 6 day "snap-back" of Prednisone worked fine....for about a week after the last 4mg dose. Pain came back quickly and has been quite debilitating from a QOL perspective. Now my sense was that after being with him for 20 or 30 years he might have recommended a new Pred prescription of perhaps a supply of 10 mg pills which I could start taking 20 mg for a day or two, then down to 15, and down to about 5 after 2 weeks, and go from there but even consider 1.5 or 2 per day for the remainder of my time on this mortal coil. Point being that this is not a drug that one tends to abuse...and he knows me better than that.

But he did not do that. He wants to look at the CRP and ESR first. I reminded him that they have been boringly normal for 2 years. So that bloodwork result hit the portal earlier today, and of course was very low. Waiting to hear from him - so this should be really interesting.

What nags me is the very thought that since he cannot clinically rationalize the pain, he may think it's not real.

More soon....unless you tell me to stop whining,

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I’ve been battling for 7 years. I get what you are saying and feeling. Only opioids and/or burst prednisone were effective in controlling my pain. ( my blood work has been normal also)
We all know opioids are a rabbit hole and burst prednisone is unhealthy. Quite a dilemma. Hangin in there.

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I understand that prednisone lessens the inflammation in the bursae and thereby cuts down the pain we feel. No one suggests that it lessens the basic disease, however. The only effective attack on the underlying problem seems to be--for some, at least--adopting an anti-inflammation diet. I am just a month into PMR treatment with 20mg, and I certainly am going to follow the excellent diet tips in the forum. Still, wouldn't it be wonderful if medical researchers found a cause for PMR? Now that we are approaching 2% of population, maybe eventually more attention will be paid. In all the reading I've done of NIH documents, there are studies but no useful conclusions, mostly "It seems likely that...".

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I think the pred does dial back the amount of cytokines that are released and so lessen the damage that inflamation can do. The trick would be to convince the body that inflamatory cytokines are not needed. That is what the diet helps with. With Crohn's, I can not tolerated the ruffage so I take MSM which helps and LDN which also lowers certain cytokines.

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My Rheumatologist told me that if Prednisone didn't work, it isn't PMR

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Just 6 weeks into prednisone, I am wondering about the relationship between PMR (the disorder) and prednisone. My understanding is that the function of the steroid is to decrease inflammation in the bursae and therefore lower pain and stiffness--but it was no cure for PMR. If the steroid does not affect the essence of the PMR, why are we able to taper down from the level that first gave us relief? Are our bodies gradually making the prednisone more efficient? This query occurred to me after I found I could not go to 15mg (from a month of 20mg--I'm a big person) without some pain, but 17 1/2 works as well as the 20mg now. I understand the need to taper very slowly--I'm just wondering why it works, and I can't find an explanation on the web.

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@pkalkstein

Just 6 weeks into prednisone, I am wondering about the relationship between PMR (the disorder) and prednisone. My understanding is that the function of the steroid is to decrease inflammation in the bursae and therefore lower pain and stiffness--but it was no cure for PMR. If the steroid does not affect the essence of the PMR, why are we able to taper down from the level that first gave us relief? Are our bodies gradually making the prednisone more efficient? This query occurred to me after I found I could not go to 15mg (from a month of 20mg--I'm a big person) without some pain, but 17 1/2 works as well as the 20mg now. I understand the need to taper very slowly--I'm just wondering why it works, and I can't find an explanation on the web.

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Here's some info from Mayo Clinic that may explain why tapering slowly works...

"Prednisone is like cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their usual function."
-- Prednisone withdrawal: Why taper down slowly?
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

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@johnbishop

Here's some info from Mayo Clinic that may explain why tapering slowly works...

"Prednisone is like cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their usual function."
-- Prednisone withdrawal: Why taper down slowly?
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

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Thanks, John. Your comments are always so clear and helpful. I do understand what happens when the taper reaches a low number--different, I guess, for different people--but at the higher levels (I am at 17.5) the taper seems to work, too, and I believe my adrenals are still fast asleep. I am fascinated by this stuff and recognize there is still so much we don't know.

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@pkalkstein

Thanks, John. Your comments are always so clear and helpful. I do understand what happens when the taper reaches a low number--different, I guess, for different people--but at the higher levels (I am at 17.5) the taper seems to work, too, and I believe my adrenals are still fast asleep. I am fascinated by this stuff and recognize there is still so much we don't know.

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Just an FYI in case you haven't seen or used this tool - Another good tool for learning and finding studies on medical research is Google Scholar - https://scholar.google.com/

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@johnbishop

Here's some info from Mayo Clinic that may explain why tapering slowly works...

"Prednisone is like cortisol, a hormone naturally made by your adrenal glands. If you take prednisone for more than a few weeks, your adrenal glands decrease cortisol production. A gradual reduction in prednisone dosage gives your adrenal glands time to resume their usual function."
-- Prednisone withdrawal: Why taper down slowly?
https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

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I had a condition that was was called “prednisone responsive” but only if I took a high dose. I usually started with 60 mg followed by a fast taper over a month or two. I could only tolerate 60 mg for about a week so it was good that I could taper down quickly.

When PMR was diagnosed my symptoms didn’t respond well to the higher dose but my symptoms were “manageable” at 30 mg or so. That was my “stable starting dose” however inflammation was still present on 30 mg.

It took many years to get down to 10 mg and maintain that dose. By that time my adrenals were very suppressed and my cortisol level was low unless I took prednisone.

I think my adrenals were incapable of regulating any increased levels of inflammation whether it was caused by PMR or something else like an infection, or other forms of stress … emotional or physical. It all caused inflammatoy pain. Whether or not it was PMR was hard to know with any certainty.

I think it mostly depends on how quickly a person can taper off prednisone. That becomes harder and harder as time goes on because the body because dependent on the exogenous kind of cortisol.

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