Feeling rubbish again at 2.5mg prednisone

[HelenDaisy]

Hello, I’m hoping for advice again.

I was diagnosed in March 2019 and have spent 5 years slowly tapering with a couple of flares. The last one was a few weeks ago at 2.25mg when I realised my arm and shoulder pain and tiredness was a flare. I went up to 7.5mg for a week and

then resumed at 2.5mg.

My issue is that I’m now getting pain in my thighs and buttocks again.

My regular 6 monthly Rhuematology appointment has just been postponed until mid July.

I really don’t know what to do now. Any advice would be appreciated.

[DorsetLady PMRGCAuk volunteer]

You may have needed longer than a week at the increased dose… I usually suggest 7-10 days but you can stay up to 14 days without impacting on drop back down.

Maybe have another go - trying for 10 days this time - and then drop back to 3mg…

[HelenDaisy in reply to DorsetLady]

That sounds like a good plan. Thank you.

[PMRpro Ambassador]

In addition to what DL has said - PMR can flare because of something else, not just overshooting the dose. If it is an increase in disease activity - you may need more ongoing, not just for a few days.

[arvine in reply to PMRpro]

i mentioned to my rheumy that I am on this forum, when had virtual appt with him last week, and about painful hands especially in mornings and , other issues that seem somewhat worse , since tapering to 4 mgs pred, which have been on now for well over a month, the suggestion of increasing dose for few days as is sometimes suggested here, his response was “of course it would probably help any pain, as prednisone is a painkiller!”, to which I didnt respond, he is the second rhuemy Ive had in last 7 years, and feel a little discouraged with his care

[HelenDaisy in reply to arvine]

Sometimes it all seems so vague. How do we negotiate through it?!

[PMRpro Ambassador in reply to arvine]

I wish I knew what makes them think ALL pain responds to pred!

[HelenDaisy in reply to PMRpro]

How on Earth do you work it out though?

[PMRpro Ambassador in reply to HelenDaisy]

If the flare protocol doesn't work when you go back down to just above the dose where it started, it suggests you need more. It isn't always straightforward.

[blueisgreen]

What level of prednisone did you start on? I had PMR for 8 years during which I finally tapered down to 0. Within a few weeks, however, my doctor diagnosed me with fibromyalgia, which causes pain all over the body. I know this sounds weird but I would rather have PMR where you can eliminate the pain with prednisone vs. Fibro where there is no remedy that works 100%. I'm living with it but the pain can wear you down. There is no "off ramp" for Fibro.

[PMRpro Ambassador in reply to blueisgreen]

Have you tried a short course of pred again? When PMR-type pain appears so soon after stopping pred it is often because the disease activity was very low not gone and inflammation took some time to build up to the level where you could feel it. PMR doesn't magically turn into fibro - just because the doctor doesn't realise that can and has happened.

[HelenDaisy in reply to blueisgreen]

That’s so tough. Good luck with your new journey.

[HelenDaisy in reply to blueisgreen]

I started at 20 mg then soon on 15. Tapering slowly ever since.

[Olympian]

I was diagnosed in 2020 and tapered very slowly got down to 1.5 but foolishly had my flu jab covid and shingles jab too close together so a flare.I am now down to 3 of pred so again I take it very slowly so fingers crossed I can continue to taper successfully.My only recommendation slowly does it Good luck

[HelenDaisy in reply to Olympian]

Hmmmm. I didn’t think about that. I had my shingles booster last week. Maybe that triggered it.

[Olympian]

I am almost sure it was the Shingles that triggered my flare.Good luck moving forward