At what reduced dose of pred might GCA flares occur?

[Cobalt2sister]

have reduced from 80 to 50 ( with only 3 brief episodes of mild temporal pain then fine). If I have flares it might serve Dr indication it is GCA ( they are still teasing out whether its negative biopsy GCA). Thursday I go down to 40 and wondering if flares might still happen. At what point do GCA flares usually happen? Would they have happened already? Is this a useable " diagnostic tool"?

I see rheumy in may for first time for her opinion ( presently working with Neuro ophthalmologist).

Any ideas or experiences would be appreciated. Thank you. If no flares does it mean it wasn't GCA. My inflammatory markers are down.

[DorsetLady PMRGCAuk volunteer]

Simple answer, whenever you go below the dose that controls the inflammation caused by the underlying illness….so no specific number as such.

In your scenario, where the docs are trying to prove/disprove, bit more difficult. The usual lowest start dose for GCA is 40mg, so you might expect that to be it, but as you have been on Pred for some time, it might be significantly lower than that before the inflammation has chance to build up again.

Hopefully a Rheumy will have a slightly better approach, the fact that you have no symptoms, and blood markers are moving in the right direction may steer him to the correct diagnosis.

[Cobalt2sister in reply to DorsetLady]

Thank you, that is helpful

[PMRpro Ambassador]

As DL says - you would flare if the pred dose is too low for the CURRENT level of disease activity and that varies, highest at the start but then it falls off over time and you can reduce the amount of pred because less inflammation is being created. The pred only mops up the inflammation, it has no effect on the actual disease process underlying it.

It isn't really a diagnostic tool - although response to pred or its withdrawal is a brick in the wall of evidence alongside the symptoms that were observed and raised blood markers if they were present - they aren't in about a fifth of patients. It all depends on how much activity there is - they use high doses to get a quick response to reduce the risk of visual loss but they may be WAY higher than is actually required so you may be able to reduce a long way before you get into trouble with a flare. Or the first 10mg may take you to too low a dose. No way of knowing in advance.

[Cobalt2sister in reply to PMRpro]

Thank you. As always this forum offers so much support and wisdom.