GCA tapering

[GracieSimp]

I have been nicely tapering my ored down to 4mg keeping to my rheumatologist schedule . Have been until now feeling much better as a result. However, my original temporal headache has started again. Can I just slightly up my steroids and - pray god- not have to go right back to the heavy dose I started on - I’ve had such a bad year coping with the after effects of pred I can’t contemplate it again especially as we approach Xmas! Thanks for any advice.

[PMRpro Ambassador]

The usual advice from experienced and good rheumies is to add 5mg to the dose at which a flare appeared until the symptoms you are worried about are gone. If that is less than 7-10 days you can then drop straight back to the dose ABOVE where the flare appeared, if longer you can probaby drop in a couple of steps. There is little point going back to the lower dose, it will probably happen again.

At what point did you start reducing at 1mg at a time and how long do you stay on a dose. Although they say 1mg at a time under 10mg, by the time you are down to 5mg that becomes 20% of the current dose (and rising) which is a big step.

What were your adverse effects? There are ways of mitigating most of them when you know how.

[GracieSimp in reply to PMRpro]

Thanks - good to hear from you as it’s hopeless trying to get through to rheumatology or doc. I took 9 mg this morning as a result of your advice and keeping my 🤞🏻. I will heed your words and drop (if symptoms reduce) probably in two stages back to 4mg -do I do this to dropping 1mg a month as I have been doing or can I go back to 4mg quicker than that. Previously I reduced 1mg every fortnight once I got to 10 mg - before that slowly and monthly. On high dose steroids I felt completely spaced out/dithery/ strange and exhausted. I’ve lost half my hair too but I know it’s a small price to pay. I’ve controlled my weight though by being careful and sugar/carb conscious - though not completely cutting out / I believe in eating all food groups. I also exercise /walk 40 mins most days so do try to help myself. Can’t wait to be rid of meds - I take for cancer/osteoporosis/bronchectasis/and GCA - all meds come at a price I reckon. Thanks for your advice.

[PMRpro Ambassador in reply to GracieSimp]

It depends on how long you are at the higher dose and on you - the first is easy: up to 7-10 days you can drop back without any problem. YOU, on the other hand, are an unknown factor. Some people manage it in one, 5mg is a normal drop in short term pred use. Others don't.

But be wary of going back to 4mg again - that was where you developed the problem, 5mg may be much better. You aren't going hell for leather to zero, you are looking for the lowest dose that works for you.

[GracieSimp in reply to PMRpro]

Thank you / I’ll go very steady as anything below 10mg in my experience is fine and I’ll stick at 5 /once I get back there - for quite a while before I attempt another drop.

[DorsetLady PMRGCAuk volunteer]

Looked at previous posts - as you have been in Pred less than a year you have done very well to get to 4mg without problems, but now is definitely the time to slow down.

PMRpro has given good advice.

Whether you have side effects or not (and once in single figures they are minimal) it’s obvious that your GCA is still active, so you need the correct level of Pred to control things.

[GracieSimp in reply to DorsetLady]

Thanks