PMR - Decreased prednisone and pain returned

Hello, Veronica here. I have had Polymyalgia for 9 years. Every time I reduce down to 2.5mg of prednisone I flare up with pain in shoulders, arm muscles and hips and usually have to increase. I’ve had the pain now for two months and wonder if this will go in time or if I need to increase yet again. Any advice would be welcome.

Welcome @veronicamac, Sorry to hear that you have been struggling for 9 years with PMR. When you say every time you reduce down to 2.5 mg of prednisone the PMR flares up and you have to increase the dosage. I'm wondering how much you are tapering down when you go to 2.5 mg. It may be that it's too large of a taper down percentage wise. What dosage were you taking before going down to 2.5 mg?

Hello John, thank you for responding. when I flare up I usually have to increase to 8 or 10mg for pain relief. I reduce by 1mg monthly until 5mg then 1mg every 6 weeks or so until I reach 4mg. I then reduce by 1mg after two months then on 3mg for a further 2months then 2 1/2 and within a week or so I had a flare up.

You might want to give this tapering plan a try to see if it can help you get off of prednisone.

-- Dead slow and nearly stop reduction plan:
https://healthunlocked.com/pmrgcauk/posts/131189593/dead-slow-and-nearly-stop-reduction-plan

I have found that dropping by a 0.25mg every 2-4 weeks is better for me than 0.5 or 1mg per month. Adding further complication, i am taking an am and pm dose which requires me to drop the same amount from both doses to try to maintain the 2:1 ratio. The problem is that Prednisone doesnt come in pills less than 1mg and it is very difficult to divide a tiny pill into accurate quarters. Seems like nothing about this condition is straightforward or easy!!!! If anyone has any solutions to help, i would appreciate it.

Thank you so much for this very helpful information John. I will now increase my prednisolone to 5mg or to the level I need to be to remove pain and then start on this method of reduction. This is the first time I have heard of a possible alternative to get off of prednisolone.

I liked the 2:1 ratio for a long time but at some point it didn't seem necessary. I mostly split my dose because of waking up in pain at 3 a.m. almost like clockwork. The pain was bad enough but waking up so early wasn't good either. Splitting my dose in a 2:1 ratio with a morning dose and an evening dose alleviated both the pain and I didn't wake up so early.

At some point I went back to taking my entire dose in the morning. It must have been when I got below 10 mg for my total daily dose. I don't recall ever dividing any pill into 4 quarters. I would split them in half sometimes. The 2.5 mg tablet came in handy whenever I needed a .25 mg portion. Half of a 2.5 mg tablet is 1.25 mg and then I added 1 mg tablets as needed to get the dose I wanted.

My rheumaologist was always willing to prescribe any denomination of prednisone I wanted. All I needed to do was say which size of pill I needed. I kept a good supply of every size of prednisone tablet.

My doctor has me doing the 2.5 drop every 2 week. A lot of my pain has returned but my inflamation markers are normal so she doesn't want to increase. She also then includes maybe not PMR!
So then what is it? My symptoms really only point to pmr the other auto immune choices don't fit my symptoms. Very stressful.

Welcome @joaniem5, I'm sorry to hear that you have joined the PMR club but you have come to the right place to learn more about the condition from the experiences of others. Tapering too much, too fast is a hallmark of PMR flares with the pain returning. I don't believe the inflammation markers by themselves dictate you have PMR. There are a lot of members who have normal CRP and ESR levels but still have PMR pain. Here's is some research for more information on the topic.

"Normal ESR and CRP should not stop to include PMR in differential diagnosis."
— Polymyalgia rheumatica with normal values of both erythrocyte sedimentation rate and C-reactive protein concentration at the time of diagnosis: https://academic.oup.com/rheumatology/article/58/5/921/5285558

--- Treat-to-target recommendations in giant cell arteritis and polymyalgia rheumatica: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10803996/

My rheumatologist had me keep a daily log with my level of pain (1 to 10) and my dosage of prednisone for that day. He also gave a suggested tapering schedule but emphasized that I need to listen to my body and not taper if the pain was too much. For me that was anything above a 2 when I woke up the next morning and it was time to try to taper down to the next lower level.

Do you keep a daily log of your prednisone dose and level of pain when you wake up?

Another method that is a similar slow reduction to the link provided by john is to alternate days, higher dose, lower dose for however many weeks, then drop and continue. Example 5mg one day followed by 4.5 the next day for 4-6 weeks, then 4.5mg followed by 4mg for another 4-6 weeks.