How best to reduce Steroids

[Kailacobweb]

Is it better to wait until all symptoms have completely gone before reducing steroids or just until symptoms are manageable? What level of head pain, scalp irritation, and jaw stiffness? Had GCA since July, started at 40 and now on 20 but trying to get down to 17.5 but still getting some symptoms especially if I do much.

[DorsetLady PMRGCAuk volunteer]

Hi,

If you have GCA, you really don’t want ANY level of head pain, scalp irritation, and jaw stiffness. That just proves your GCA is not controlled - which is not a good place to be.

At six months in, you are very likely to flare with GCA, so you need to seriously think about upping your Pred rather than reducing. Please discuss with your doctor.

[jinasc]

Are you in the UK..............it is helpful if you put the Country in your profile.

I had GCA, now in remission.

I was diagnosed in the February and was on 60mg, it took me six months to get down to 20mg. Then I had a 'flare' and back to 60mg. We realised later the drop was too fast.

As DorsetLady has said, you should not have any level of head pain etc. BTW your Pred should be dropped only at 10% at a time. I would be upping my pred back to where I was, with no headache etc.

Is your medic a Rheumatologist or a GP?

[PMRpro Ambassador]

If you have GCA symptoms you are at too low a dose. No ifs or buts. A study found there is still evidence of disease activity even after 6 months on high dose steroids - that is above 20mg pred. You are barely at that time and are already below that having started at the bottom end of the dose range for GCA. It is well known that GCA has a propensity to flare in the first 18 months - and the most common reason for a flare is reducing too fast or too far.

GCA is a serious systemic illness and the first year after diagnosis can be tricky in various ways. Please discuss your dose with your doctor and do try to avoid overdoing it - it will pay in the long run.