How to Slowly and Safely Taper Off Prednisone but ... no set rules.

From 10 to 5, taper was 1 per month. This was an interesting period. Mild osteoarthritis in wrists (dx by xray, since gone), occasional weird cramping in arches, index fingers, rotator cuff pains…but never PMR.
SED was normal.
I think I would continue tapering if I were you, expecting some minor discomfort from time to time.
Float your plan past your doc, have enough prednisone and a dosage plan to deal with a flare if it happens, and keep moving. Good luck.

"Regarding the taper, Actemra supports a faster taper, especially if your inflammation is primary due to interleukin-6, which Actemra and Kevzara block."
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I think this is true up until the point when the adrenals need to produce more cortisol. After starting Actemra, I was able to taper my prednisone dose by 1 mg per week at one stage.

At first, I tapered by 1 mg per month from 10 mg to 7 mg. I didn't have any instructions so I wasn't sure what to do. I didn't feel any different on 7 mg except for not having a flare which usually happened whenever I got down to 7 mg. Actemra was probably working but I wasn't sure.

At 7 mg I decided to put Actemra to a test and I started tapering by 1 mg per week. I thought for sure I would relapse but nothing noteworthy happened.

When I was on 3 mg I felt insecure. I reminded my PCP that an endocrinologist wanted to check my cortisol level IF I could ever get to 3 mg of prednisone. The assumption was my cortisol level would be low after 12 years on prednisone.

My PCP checked my cortisol level and it was low but I didn't have any noteworthy symptom change. My overwhelming fatigue was already a characteristic of how I always felt at this stage. I was told in no uncertain terms that I should NOT taper my Prednisone dose any lower than 3 mg until I could be seen again by the endocrinologist. That visit happened 2-3 months later.

The endocrinologist verified a low cortisol level but she was "encouraged" that I had a cortisol level. My cortisol level was not as bad as she expected it would be. We had a long discussion about adrenal insufficiency. I was given the option of switching to hydrocortisone or staying on Prednisone. I elected to stay on 3 mg of prednisone.

My next endocrine visit was 3 months later. I thought a Synacthen test would be done at the next visit. I "experimented" with my Prednisone dose in the interim just to see how I would feel being off prednisone. I did some things that I would rather not suggest that anyone should try.

At my next endocrine visit my cortisol level was rechecked. It was "adequate" and my endocrinologist said it "might be safe" to discontinue prednisone. A Synacthen test was going to be done if I was symptomatic when I was off prednisone.

My first attempt to discontinue Prednisone was a huge setback. My ophthalmologist restarted me on 60 mg of Prednisone again. Thing were complicated during the year that followed.

My second attempt at stopping Prednisone was about a year later. I was successful the second time. My overwhelming fatigue didn't dissipate until after I got off Prednisone the second time.

You say "I think this is true up until the point when the adrenals need to produce more cortisol. " I think it would be more accurate to say "I think this is true up until the point when the adrenals need to produce more cortisol, and then don't because they haven't been active due to prednisone." I haven't been through a complete taper yet, but I'm hoping my adrenals will produce more cortisol as needed. That could be overly optimistic, but I'll find out eventually one way or the other.

I am on my third day of 4mg. Hands hurt a little but about like at 5mg which I was on for last 4 weeks. A little tired. I think I will just keep on at 4mg for the next several weeks and see how I feel. I had a solid work out yesterday so maybe I will take a day off. I am 6 months into this thing started at 15 and had a flare last time I got to 5 which sent me back up to 8 about 3 months ago. So far I am not doing the stair stepping taper or 1/2 mg bits.

Below 20, I tapered at 2.5 every two weeks to 10, then at 1 per month to 5.
No problems.

I am pleased to hear your tapering method works for you . Every time I get below 5mg the pain in my shoulders , neck and legs is terrible . I’m currently on 4mg and struggling and don’t know what to do for the best

I am sorry to hear that tapering is not working for you. Perhaps your doctor can suggest other medications or approaches. From the posts I have read, it appears that there is no “one size fits all” solution for this illness, a situation that I find very difficult to cope with.

I know everyone is different and I have tampered many times and found that almost always I can get down to around 4 or 5 mg before a flare up. If you are at 7 or so tapering 0.5 mg every week to 2 weeks should be ok but again that is just my experience. I have PMR as well. I also think when you get below 5 mg you may not want to taper by 0.5mg as that becomes a higher percentage of your total dosage than at 7 or 8 mg. You could always take a full dose one day and then the next take 0.5 less, that way you should be at a 0.25 taper. Again just my findings personally and not suggesting from a professional point of view that it is the best way to taper.

I am also feeling renewed pain at 4 mg, which I have been on for two weeks. Pain is in shoulders, neck, across top of back. I am really questioning how much is caused by osteoarthritis, which is severe in shoulders and moderate in neck (confirmed by X-ray and MRI). I have requested an order for inflammatory markers. I am also scheduled for an ultrasound of shoulders and hips, but don’t really understand what that will reveal. Has anyone had one and what did it tell you?

It is so difficult to know what is going on when our Prednisone dose gets low.

Prednisone has a way of "masking" pain caused by osteoarthritis so that is certainly one possibility.

Adrenal insufficiency can also cause muscle and joint pain so that is another possibility.

A third possibility is an actual PMR flare.

It could be a myriad of other things that can cause pain when our prednisone dose is lowered.

I never thought inflammatory markers shed much light on anything given there are a myriad of additional reasons why inflammation markers may be raised. Even the excess weight I put on while I took Prednisone may have increased my inflammation markers.

I don't really understand what an ultrasound will reveal. There is no definitive diagnostic test for PMR so I doubt there is anything definitive to say if you are having a flare or not.

Let us know what your doctor decides when they make a decision.

I remember when someone suggested piriformis syndrome which supposedly is common with PMR explained my rather severe sciatic pain. That was far from the truth when an MRI revealed severe spinal stenosis in my lumbar spine.