Odd flare symptoms while tapering steroids for GCA?

[Handloomweaver]

I wonder whether anyone has experienced these symptoms while tapering Prednisone? Over the last 6 months I have slowly managed to reduce my dose to 2.5mg. The plan provided by my rheumatologist is to reduce by half a mg every month. But, every month when I reduce I get flare symptoms after 5-7 days: temple and jaw pain. I always have a CRP blood test before tapering and it’s been a normal 1-4. So far so good. When I get a flare I’ve been told to keep going and to take paracetamol which works.

However, this time when I dropped to 2mg I got a very different flare on day 5 - a painful headache in the right side of my head, and pain behind my right eye. No temple or jaw pain. My CRP score was 2.1. I. I have been taking regular doses of paracetamol to keep the pain at bay, including during the night when it wakes me up.

but lo and behold - on day 8 it’s gone completely! hurrah.

Has anyone else experienced this?

[DorsetLady PMRGCAuk volunteer]

Personally no.. but I’d be wanting to slow down the tapering whatever… does sound as if you are getting to Pred level where body is objecting a bit too much and too often!

[PMRpro Ambassador]

As you get lower, the relative size of the step down in dose is larger and you may experience great steroid withdrawal symptoms - which, to complicate things, are often very similar to the disease for which you are taking the pred!

I doubt the CRP is very meaningful if the symptoms are transient - it takes enough inflammation for long enough to make the liver trigger the production of the proteins that increase the markers. But I really do agree with DL - those are also signs you are getting very close to your lowest effective dose. To get to this dose so quickly really is impressive so don't push your luck.

I just had a quick look at your bio and noticed back when you joined you said "I’m hoping that the steroids will eventually stop my GCA completely". I don't know if I commented then but I will now - pred does nothing to the underlying cause of the symptoms of the GCA. They continue in the background while the pred is a management strategy to combat the inflammation and reduce the symptoms in the meantime until the sutoimmune disorder burns out and goes into remission. Until then, you need enough pred to manage the (hopefully) ever decreasing inflammation. But if you don't - it mounts up like a dripping tap fills a bucket sooner or later, and you can end up in a mess.

[Handloomweaver in reply to PMRpro]

Thank you for that comprehensive reply. It all makes sense. This is my second attempt at tapering. In 2023 my Rheumatologist thought that I didn't have GCA, so was trying to get me off steroids quickly but it didn't work. I got down to 5mg and had huge flare and my CRP went up to 40. This time I have been taking it very gently. I was on 40mg in October 2023, but am now on 2.4mg. That's over a year, so in no way a quick reduction.

I understand that GCA isn't 'cured' by Pred. but I'm encouraged by the fact that, despite the flares, my inflammation has remained 'normal' so I will continue to reduce carefully in the hope that I can eventually stop needing steroids.

Interestingly, the head and eye pain I have been experiencing in the last 4 or 5 days has stopped completely now. I guess thats my system coming to terms with the half a mg drop.

Wishing everyone a Happy Christmas and a healthy 2025

[MiniSpec]

Handloomweaver, you said, "I was on 40mg in October 2023, but am now on 2.4mg. That's over a year, so in no way a quick reduction."

Sorry to disagree, but I think going from 40mg per day of Pred to 2.4mg per day of Pred in just over a year is a VERY quick reduction.

If you've read about the DSNS tapering method then you know you need to ensure that the reduction is 10% or less of the previous dose. So from 40mg you should have reduced by no more than 4mg at a time, and from 2.5mg to 2mg you should reduce by 0.25mg at a time in order to stay at a 10% reduction rate.

You also said, "I understand that GCA isn't 'cured' by Pred", but then you went on to say, "I will continue to reduce carefully in the hope that I can eventually stop needing steroids."

GCA will decide when you stop needing steroids, not you. As PMRpro has just said in her reply to you above, Pred is just a management tool. It has NO effect on the underlying disease.

Furthermore it's not a race to zero Pred. Instead you'll probably find there's a level of Pred you need to stay at in order to prevent the GCA from flaring, and once you've found it, you'll need to stay on that dose until GCA lets you know otherwise.

[PMRpro Ambassador in reply to MiniSpec]

To be fair - with GCA and the higher doses, that first stage can often be relatively fast and with bigger steps if you don't have problems. You just have to remember that the lower you get, the closer you are coming to where you are aiming for. And like titration in chemistry you can do a rough first run that shows you a narrowed range - but you don't let anything develop, if 30 is good, 20 is not, you go straight back to 30 and crawl down to where you want to be.

[Handloomweaver in reply to PMRpro]

I absolutely get it. Thank you. I’m perhaps too optimistic and definitely too impatient. 😊

[PMRpro Ambassador in reply to Handloomweaver]

I think most people are - including a lot of doctors! They convey their desire to have you off pred, make you think being on pred is a bad thing, The one thing to avoid like the plague is getting too confident and not waiting long enough for things to settle after each drop. Everyone is different, some DO sail down the dose as you have but you are at the really tricky stage where you have to balance keeping PMR/GCA under control AND getting your adrenal function to wake up and function reliably. And the smaller the step down and the longer the gap between them, the less likely you are to have problems. The dose is so low there are no real downsides to going slow.