I’m having a GCA flare

[Grey7]

hi, I started by taking 60 mg of Prednisolone March 2023 for GCA, I have take 1mg for the last 6 weeks and .50mg for the last 6 days, I am now having a flare, headache, mild flu symptoms, fatigue and my blood pressure is 168/74, have I tapered to quickly? and what dose of prednisolone should I go back to? This is the second time I have had CCA, roughly about 12 months in between,

Thank you.

[SnazzyD]

Oh dear, what makes you think it is a flare rather than a viral infection? To have got down to 1mg in a year is very fast and the first 12-18 months is a vulnerable time, so a flare is not out of the question. How have you felt until now?

[Grey7 in reply to SnazzyD]

I was doing well on 1mg Its just started since I went to half a mg, I will stay on 1mg for a while longer, thank you

[SnazzyD in reply to Grey7]

Is your headache like your GCA headache before? If it is a flare you may well need more than 1mg. If it is an illness, sick day rules are worth thinking about and if it is low adrenal function you need to think about going back to 1mg to give the, a chance to catch up.

[DorsetLady PMRGCAuk volunteer]

if you’ve got to almost zero within 12 months have to say, not really surprised you’ve had a flare… particularly if only on Pred.

But could also be adrenals struggling - flu symptoms and fatigue sound suspiciously like that… do you think your headache is GCA - and do you have any other GCA symptoms?

This is usual advice for flare -

healthunlocked.com/pmrgcauk...

And this gives info on adrenals -

healthunlocked.com/pmrgcauk...

[Grey7 in reply to DorsetLady]

Hi , I have no other symptoms but the headache, I hope it is the adrenals that would make sense and thank you so much.

[PMRpro Ambassador]

You have tapered faster than most people manage and GCA is very prone to flaring in the first 18 months if you overshoot the dose you need. However - poor adrenal function is more likely to cause low BP.

I would try DorsetLady's advice for a flare and see how you get on. But otherwise, maybe time to ask the doctor?

[agingfeminist]

I have just moved 0.5 mg and begun to have headaches like the ones I had pre-PMR/GCA. I found paracetamol extra (with aspitin and caffeine) do the trick...so I know it isn't GCA.

The steroids seemed to have prevented the migraines I had pre PMR/GCA!

[Richmond162 in reply to agingfeminist]

Hi. I have PMR and GCA. Can’t seem to get below 6mg before feeling awful. I too had migraines on left hand side for 30+ years and steroids have stopped them. Wondering if steroids will be forever now?

[agingfeminist in reply to Richmond162]

I got stuck at about 5mg for a year..but I am now on 0.5 mg (first whole week on this dose!). No reason to assume it will be forever...just leave it a few months and then try to edge down (dead slow method) by only 0.5 mg on one day of the week.

Good luck.

[Richmond162 in reply to agingfeminist]

Thanks. I will start reducing by that amount.

[PMRpro Ambassador in reply to Richmond162]

How long have you been diagnosed? People still get off pred after as much as 10 years - so don't assume forever just yet!

[agingfeminist]

If you are feeling fluey then wait...

and to clarify

it is only a reduction of 0.5 mg on one day of the week...then in the following on two days of the week etc.

then it takes 7 weeks to go down to a daily dose that has been reduced by 0.5mg.

all the best