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Prednisone tapering is challenging. What does remission feel like?

Polymyalgia Rheumatica (PMR) | Last Active: Sep 3, 2023 | Replies (209)
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@elizabethjoan

So..a quick and straightforward question…actually two.
1. Do we not taper our prednisone dose AT ALL if we are still having pain?
2. If we taper and the pain comes back…at say a level of 7 or 8 or higher…do we immediately go back to the previously higher dose for a week or so or continue at the lower dose for a couple more days?

I was doing well, tapered from 15 to 12.5 mg two days ago and woke up at 3 am with pain at 8+ everywhere…even my hands.

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Replies to "So..a quick and straightforward question…actually two. 1. Do we not taper our prednisone dose AT ALL..."
John, Volunteer Mentor | @johnbishop | Aug 17, 2022

Great questions @elizabethjoan. I think we are each different. I had similar episodes during my first round with PMR which is when my rheumatologist suggested keeping a daily pain log along with how much prednisone I took. When it was time to taper, he said if you are having a little pain/aches (0 to 2 on my scale of 0 to 10), go ahead with the taper to see how you feel the next day. If my pain was above 3 or more, I didn't taper and tried to stay at the same dose for another 2 days before trying again. If I still had a high amount of pain, I upped my prednisone by half of the previous taper.

My experiences related to your questions...
1. Did not taper if I was having pain above my threshold.
2. Did not go to the previous dose but went back up by 1/2 of the previous taper or close to 1/2. For example, you tapered down from 15 to 12.5. I would increase 1/2 of the drop or close - say 1 mg, 1.5 mg or 2 mg to still have a taper of some sort and try not to go all the way back to the previous dose. This was where scripts for the 2.5 and 1 mg tablets helped but it wasn't fun splitting the 1 mg tablets.

Other members have mentioned splitting your daily dose of prednisone between morning and afternoon/evening. I never tried it but it sounds like something worth trying to stay at a lower dose.

You might find the tapering plans on the PMRGCAuk site helpful - https://healthunlocked.com/pmrgcauk/posts/private/146756447/tapering-plans-%F0%9F%93%89

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