Update on Prednisone tapering

[LucilleG]

I wanted to give a quick update on where I’m at in terms of PMR and my prednisone dose. I was originally diagnosed with PMR in 2021, after having symptoms for 5 months. I was started at a dose of 40 mg.

Using the DSNS method, I am down to 2.75 mg. I’ve been at that dosage for 2 weeks now, and I'm trying to decide if I should go right into another taper, down to 2.5 mg. I have had niggles over the last 2 weeks almost every morning before I take my dosage of Pred, with the niggles going away within an hour. I think I might wait for another week or two.

I have been on long term disability from my job since the end of 2021, and have been back to work since early 2024, albeit working about an hour a day. Over the last year, I have slowly increased my work hours, and I am now at 50%. My GP (and my employer agrees) wants me to stay at a 50% workload until I'm off Prednisone.

This has been my dosage of Prednisone since starting:

40 mg - start

14 mg - end of 1st year

5 mg - end of 2nd year

4 mg - end of 3rd year

*2.5 mg - end of 4th year (this is next month - I am currently at 2.75 mg)

I am grateful for this website!

[DorsetLady PMRGCAuk volunteer]

If you’ve had a couple of niggles, sensible to stay put -and hope they resolve.

There’s a very fine line as you get lower between enough Pred, just enough and definitely not enough -so no rush..

Give it another few weeks -and then decide.

Good luck…

[LucilleG in reply to DorsetLady]

Yes, I agree with both you and PMRpro. I'll wait a few more weeks to see if the niggles go away, and make a decision at that time.

I stayed at 4.75 mg for 4 months, 4.5 mg for 4 months, 4 mg for 4 months, 3.5 mg for 6 months, and 3 mg for 3 months. I have to look back at those timelines and know that I may need to stay at 2.75 mg longer (started tapering down to 2.75 mg in early March).

[PMRpro Ambassador]

I agree - niggles are a sign you aren't quite ready to go lower just yet. You may not get further for a while - you are seeking your lowest effective dose, it isn't a relentless reduction to zero pred and you do get to an interim destination now and again!

You have done well - all the best.

[HeronNS]

Speaking from my experience I believe at this very low level one should not taper if niggles are present. In fact, you won't want to hear this but if you still have the niggles after two weeks on current dose it might be a good idea to go back up a half mg, certainly do not reduce anymore until the niggles are gone. I got to zero twice. Once I followed a schedule, although I did do each DSNS step twice, taking a year to get to zero from 2 mg. I only had minor niggles. Within 6 weeks I was back on pred and a few months later was in the midst of a major flare after trying unsuccessfully to stay on my previous lowest best dose.

After the flare was finally over the next time I headed towards zero although I used the DSNS pattern I made sure never to drop unless I had no niggles. By the time I got to zero apparently I really was in remission and have remained so for over 14 months. But my previous belief that I could tolerate the niggles without consequences caused me to need a significantly higher dose of pred for many months.

Take care!

[LucilleG in reply to HeronNS]

Thank you soooo much for this! I keep thinking because the niggles go away within an hour of the Prednisone, that it will be fine. For now, I'll stay at 2.75 mg and monitor how I'm feeling very closely over the next few weeks. If the niggles don't go away (edit to add - or of they get worse), I will go back up to 3 mg asap.

[HeronNS in reply to LucilleG]

Good! The point is, you wouldn't have niggles after the first handful of days at lower dose if you didn't need that fraction more pred. A little more practice of patience, as if we hadn't already had enough of that!