Prednisone and Pain

Hi Keelin. This is an interesting case as so many of us have considered Prednisone a miracle drug of sorts in helping relieve such intense PMR pain. Like so many, I had never even heard of PMR when it hit me like a ton of bricks during the pandemic. Pain relief came within 24 hours, and the two-year taper (titration) began then. I had no side effects to speak of - although we all have been told that it is optimal to get to very low dosages, or completely off of the stuff ASAP.

Dangerous to speculate, but I suspect that your Sed Rate (ESR) and CRP levels were way out of norm...otherwise rheumatologists would not have been so sure that you have PMR. Can you verify that - and perhaps share if those levels have normalized under your current treatment?

My rheumatologist has a ton of experience with PMR patients, and he seems to think that primary care folks have a tendency to taper too quickly from the high doses to the 1/to 2 mg level.

Personally, I was down to zero for a few months and have recently had to go back on a one-week taper which will hopefully snap me back to some level of normalcy. I'm not sure about that as it seems to fly in the face of the aforementioned long taper, but we shall see. During all of this time, with the exception of the very beginning, my Sed Rate's and CRP have been very low (normal). This is my struggle. There are times when the pain is so intense, but the labs always indicate zero inflammation in the body.

Hope you feel better and do continue sharing. This forum has great value.

I also have a lot of severe pain and GP has told me to increase prednisone 5 mg. to 5.5 mg. A week ago I took 10 mgs. just one day and it knocked the pain back for several days but it has returned. This flare up is quite severe. I have never been 100% pain free.

Standard protocol for a flare is to go up 5 mgs. and stay there 5 or so days until you stabilize and then try reducing back to slighty where you last felt good. Can't imagine why anyone would suggest going up half-mg. I've never been 100% pain free (but read some are), but you should be reasonably comfortable.

Thank you. That makes a lot more sense than .5 mg. I have had difficulty contacting my rheumatologist but will keep trying.

My Sed and CRP only went above the normal range once…. After 5 months of pain with no diagnosis. MY normal levels are apparently at the very bottom of the “normal” range. My doc still doesn’t believe that and if I’m within the standard normal range he doesn’t think I should be having any PMR symptoms. Long story short, I believe you may have low rates like me. If you can graph the history of your levels, it may shed some light on the subject. Good luck!

As we all know, one person's experience is just that. So the following is just for me. But I am coming to believe that 10% to 20% of us have considerable PMR pain while simultaneously testing in-normal-range for Sed Rate and CRP. I suspect that someone has the data to verify or debunk this simple statement, and that the road-warrior rheumo-docs know it's true - but are frustrated because it does not always register clinically. They probably struggle with knowing that Prednisone (especially higher doses) is bad news in the long-term.

My history goes like this: Between 7/7/20 and 11/24/22, I had Sed Rate tests drawn frequently and the chronological readings were: 58, 24, 6, 14,9, 8, 2, 11, 5, 10, 9, 2, 10 (the range is 0-30)
Pain started in June/July 2020, was verified by high Sed Rate along with pain in hip and shoulder girdles. Began Prednisone taper in August, 2020 and felt better immediately (thus pretty much absolute PMR diagnosis). In July/Aug of 2022, hip and shoulder pain reemerged - and today I finished a 6 day Pred taper from 24mg to 4mg. We shall see what tomorrow brings.

During above two-year period, CRP's were around 10 at beginning, and never above 5 for the following months. I also had no headaches or scalp sensitivity.

Hope this is not too much information and, more importantly, that it is helpful. Jim

Hi @jerseyjames, Am I reading correctly that you tapered from 24mg down to 4mg prednisone in 6 days? That seems like an incredibly fast taper and my body would be screaming if it were me and I had PMR pain that was OK with 24mg but 6 days later I'm down to 4mg. 1st time around with PMR took me 3-1/2 years to taper off with the last 6 months going back and forth between 1mg and 1/2mg until I could stop with no pain. Hoping tomorrow brings you no pain!!

Hi John. Yes I suspect that Rheumatologist used it as a snap-back. I was suspicious also but was fascinated to note that the prescription came on a card with a row of 4mg pills for each day. Starting with 6 pills and down to 1. Point being that these cards seem mass produced for frequent and constant dispensing. I’ll check with doc in am to see if I should take some 1’s for a few days. More to follow. Jim

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,

It’s ok to whine… you have suffered for years. The only meds that truly improved my QOL were “burst prednisone” or Vicodin. So sorry you are in the pits.