Prednisone tapering is challenging. What does remission feel like?

You are where we all hope to be. Congratulations! Is this your first (and we hope only) bout of PMR?

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.

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

I am tapering prednisone from 10 mg. I started at 9mg 5 days ago and have really felt no difference at all in my pain levels. Should I stay at 9 mg for another week or 2 or can I go ahead and drop to 8 mg?

@hfoster, I've always been told to listen to my body and only taper when I had control of the pain. For me that was when the pain when I woke up was less than a 1 or 2 on my scale of 1 to 10. Even then it would normally get better once I started moving around and I still felt good before taking my next dose of prednisone for the day.

You mentioned that you have really not felt any difference in your pain levels since you tapered to 9 mg. Do you keep a daily pain log along with how much prednisone you are taking? What is your pain level been while at 9 mg the past 5 days?

Thank you, John. Should have mentioned that my pain level is about a 2 then gets better during the day. I have felt a bit better the last few days than I did last week, so I was thinking another drop from 9mg to 8mg may be OK. But, wanted to hear from others who have been down this road as I don't want to trigger a flare by making too many changes too soon to the Pred. My Dr. recommended going from 10mg to 7.5mg and staying there for 3-4 weeks. However, he said to listen to my body and gave me the scripts I needed to just go down 1mg at a time for as long as I need. He felt 1mg at a time from 10mg to 7mg was a bit conservative and "prolonging my time on Pred" but then again, he was a bit too aggressive moving me quickly from starting dose to 10mg. He wants me off Prednisone ASAP.

I was on 10mg for 2 months and go down 1 mg per month. I am now on 7 mg. I think it is more important to go slowly than have to go backwards.

Thank you. Did you feel a difference as you dropped from 10mg to 9mg to 8mg, etc.?

Not really sure. I was a little anxious each time I went down 1 mg. I think what will and probably is happening is that my back and neck issues will be less masked by the prednisone as I taper. So I think that the discomfort I feel is coming from my back and neck but not necessarily from the PMR.

Well, that lasted about 2 and a half weeks and I am back on prednisone again. The pain started coming back slowly, first my hips, then my neck and shoulders. Within a week I hurt all over again. I called my Rheumatologist and he said go back on prednisone, start around 4 so I did. That didn't work, next day I too 5 nope, still had pain. I went to 7 on the third day, and that worked, no more pain. Now I am at 7 for about a week and a half. Not sure where to go from here. I will keep you posted.