Steroid withdrawal symptons vs flare up

[Slowday]

I am down to 4.5mg of Prednisolone per day for the last two weeks from 60mg a year ago and am feeling the effects. Problem is I don’t know if it is normal steroid withdrawal symptoms or a GCA flare up. I am particularly worried about my eyesight – definitely worsening and very light sensitive. I am not due a call from my Consultant / team until the middle of July – I think they want to assess me for a synacthen test to see if my adrenal glands have fired up again.

[DorsetLady PMRGCAuk volunteer]

Hi, for info -

Steroid withdrawal v flare

Steroid withdrawal (or body getting used to new lower dose) usually shows immediately new dose is taken - and lasts between 2-5 days. It varies from a general feeling of being off colour to a return of symptoms pre diagnosis. For some it can be eased by paracetamol.

A flare can take anything from a couple of days up to 2 weeks to materialise- and (usually)the symptoms are similar to those pre diagnosis. Paracetamol will not help. The only thing that does is an increase in dose. Sometimes a return to previous dose is enough, but if it’s got too bad then it’s recommended to add 5mg to the dose you last felt alright - stay there for 5-10 days and then drop back down to just above the dose you flared. Stay there for 2-4 weeks to make sure all okay before you try and taper again.

My impression is definitely a flare - too fast a reduction. Normally I’d say can you remember last dose everything was ok -if so then follow advice above.

However as you are having sight issues then you need immediate advice - can you ring Rheumy Dept? Your own GP? failing that, then rock up to local A&E department.

GCA is not to be messed with, better a false alarm than risk sight loss. Please get it checked as a matter of urgency, and let us know outcome.

[PMRpro Ambassador]

To get from 60mg to 5mg in a year is unbelievably fast . Never mind your adrenals - they are small beer compared with the risk of a GCA flare which is particualrly common in the first 18 months of GCA,

If you are having eye problems please contact your team asap, do not wait. And if they are AWOL, go to A&E.

[SheffieldJane in reply to PMRpro]

I echo that. A& E. You will thank yourself whatever the verdict.