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@petermccarville

Hello @kmmi . I too was diagnosed very recently (around April 9th). And, my family doctor had me try a blast prednisone of 2 weeks, starting with 20 mg for three days and then 15 mg for three days and so on to 0. It worked at relieving my symptoms the first three days but with each successive drop I felt more and more pain. This is not a common approach and is not found in any literature that I have come across. It was a nice attempt and helped to further diagnose me but we were pretty sure I had/have PMR based on the clinical presentation, ESR and CRP blood numbers, and then the quick response to a 20 mg dose of prednisone. I started a "standard" dosage of 15 mg and am following the taper protocol outlined in an international study from 2015. It is a basic protocol but clearly it is just a guide as everyone has a different experience. I stayed on 15 mg for a month and tapered to 12.5 after that. I have been on 12.5 mg for the last three weeks and then just dropped to 10. My first drop to 12.5 mg came with about a level one pain and stiffness in the shoulders and neck. People on Mayo Clinic Connect said that that was not too uncommon and should diminish in a week or so. It did and I am not 100% after three weeks on the 12.5 but at an almost undetectable pain level. I did try some tylenol and it helped at first taper. However, what you describe sounds more like the enigmatic "flare" that we hear about. I was told by this chat room that if the pain continued and got worse after each day or week then I was tapering too fast and should go back to the original dose. In other words, I would be in a flare if that were occurring. Fortunately I have not had that happen with my first taper to 12.5 mg from 15 mg. I am hoping for the same with the drop from 12.5 mg to 10 that I just started this morning. Yes, prednisone is frightening but also a miracle. My doctor too and virtually every friend says "you gotta get off that stuff ASAP". Of course I and we all know that but there is not much else we can do. Kevzara (one of the biologicals) is possible but as far as I know, only after a fail or two on tapering. It sounds like some Drs are able to get insurance to budge and allow it earlier from what I have gleaned from this chat room. I might try that with my insurance but that can be a mountain to climb. My hope is to get to single digits with the prednisone and then look into it if I have trouble going down. I am more frightened off the prednisone creating a new problems for me than I am the pain of PMR some days but a short taste off that pain and debilitation reminds me to keep on the prednisone for now. Good luck.

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Replies to "Hello @kmmi . I too was diagnosed very recently (around April 9th). And, my family doctor..."

Thank you so much for your input.
Both my primary care doctor and rheumatologist seem to want me off the prednisone as fast as possible.
But as you and others have said maybe the taper every 2 weeks is just too fast.