So, we know there are two types of flare: an 'insufficient pred flare' which generally just requires a modest increase of pred and a steadier taper; an 'increased activity flare' when the illness is on the rise and much more pred needed to mask symptoms.
In my three GCA 'increased activity flares' (one after the third vaccine in 2021, two in 2024 following illness/virus) I have found that the (very approximate) timing is around two months of symptoms building and then two weeks to a month of plateau at highest dose, then a decrease in activity which starts slow (eg minor escape symptoms) then symptoms disappear and in a month or so it feels like the illness has stabilised.
It feels like when the immune system believes it has sorted the problem, it goes dormant but watchful for when it is 'needed' again. I suppose that is what happens with a proper illness.
I'd be really interested in any research or personal experience about this. XX
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Viveka
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I'm not sure I can differentiate between the two different types. Is the 'insufficient pred' one when you have simply reduced to quickly, and the other type, when it returns having been previously under some sort of control?
Not so much too quickly as too far - you were tapering as usual and after a taper step the symptoms started to return, going back to the previous dose sorted it. The other sort, you have been at a dose for some time and suddenly you realise symptoms are back even though you haven't changed the dose.
Yes Viveka...I would be very interested in research on this too. The answer to 'flares' isn't always to add more drugs, but perhaps to let things settle...and the difficult one for me....acceptance and pacing. 😊
I don't think I have an answer to this. Partly because I have PMR as well, and it seems a flare manifest itself more obviously as PMR, so Eventually - after mistaking the signs for normal ageing or muscle strain - I increase the dose, possibly obviating the GCA flare. OTOH I have some reason to think that maybe the GCA isn't quite under control. But you can only be sure with a PET,CT scan, and you can't have those very often.
Bear in mind though that they are most likely both part of a spectrum of disease so that YOUR GCA looks like PMR. Rather than that they are 2 different things.
Sure, but it is confusing when a few mg of pred will sort out a flare, whereas it took a huge dose to deal with GCA. Probably down to the more silent nature of GCA
Yes, but you start with high doses to reduce the risk of visual loss as quickly as possible, and it is a lot more than you will need eventually. As you taper. you are able to do so as the underlying disease activity fades but the inflammation can flare if your immune system is irritated or if you have overshot the dose you really need. It may not be immediate in that case, if there is a fair reserve and the dose is only a tiny bit too low, it can take weeks to build up to a flare.
RH tole me that in his experience most cases of initial GCA can be controlled by 20mg - though I guess, rightly, no one is willing to take the risk.
Duration of flares fascinates me. Particularly increased activity flares which seem to be of a shorter duration at peak activity than the initial illness. It makes me think that a med to temporarily dampen the immune system, say for a couple of weeks or so, should theoretically be able to stop it in its tracks.
A local rheumy here said he thought 15mg was plenty - but as we agree, you aren't going to take the risk. But you really MUST differentiate between cranial GCA that has been around a long time - like DL's - and which has already got to the visual centre/optic nerve. And Prof Quick agrees that in the event of a flare, you don't usually need to go back to the beginning, which quite a few doctors do, just back 5 or 10mg briefly. But beginning or underway, you have to clear out the accumulated inflammation. I suppose like filling your fuel tank - when it is empty, you need a lot, do it at intervals, you need less to send the indicator back up.
Technically - maybe, but once you remove that damping, the inflammation is produced and builds up again. The biologics remove the effect of the inflammation but stopping it getting at the receptors one way or another, and do have an effect on the immune system as well it seems judging by the increased risk of infections. But stop TCZ too soon, and the inflammation is still there.
I envisage the disease activity as a sine wave, builds up and fades away over time again and again. You can get to a lower dose on a downward period but flare on the upward period. All the time though the peaks get lower and lower as the underlying problem runs out of steam - plot it as a graph and lay a ruler along the peaks and you can see that progression. Is THAT predictable - if we could measure the activity and extrapolate? I don't know - though the people who never have a flare are more likely to get to the end sooner than the ones who struggle it seems.
The point is pre-diagnosis you don’t know how long the inflammation has taken to build up - might be weeks (if you’re lucky) might be months - so there’s a lot of work for the Pred to do.
With a flare the time it’s had to build up is likely to be only a few weeks so less Pred is required.
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Results of my wheat experiment
Goodbye to prednisolone thanks to Leflunomide
Do you get increased side effects from Pred when you up it to deal with a flare? (GCA)
What to do?
Flare up of GCA
