Now Reducing Prednisone

[Namurt]

Hi, I am new to this type of forum, but what I have read is very informative. I have been on prednisone since Feb, 2016 starting at 80 mg for GCA. I have only recently discovered from another who has GCA that I should have been followed by rheumatologist. So much was falling through the cracks as my GP though great, is not familiar with this disease. Since seeing rheumatologist I have reduced my prednisone from 15mg to 11mg at 1mg /week, and am doing fine. I do have a question though. I have been having brief, sporadic and severe neck cramps for no reason it seems. I wonder if anyone has experienced this? My neuro opthamologist doesn't think it's related to prednisone and it started before beginning this prednisone decrease. It seems there is always something happening that causes me to wonder "what now?"

[DorsetLady PMRGCAuk volunteer]

Hi Namurt,

Glad to hear you're "doing fine" but from 10mg down think you should be slowing down your tapering. Reducing 1mg every week, doesn't really give enough time to know that everything is controlled at one dose before you reduce to the next. 1mg may not sound like much after you started at 80mg, but the lower you go, the bigger the reduction becomes in percentage terms.

You are only 18months into your GCA journey, and although doctors very often quote the 2yrs time period, very often it lasts a lot longer, so if it's still active you need to be wary of reducing too quickly.

Your neck pains may be an indication that you have gone below the Pred YOU require, but it could well be other things. Sometimes it's difficult to tell what is GCA and what isnt.

If it were me, I request an ESR/CRP blood test to check the inflammation markers, that should give an indication of whether you're on too low a dose of Pred.

[PMRpro Ambassador]

Actually I think your GP has done a pretty good job. I really don't like the rheumy's idea of reducing 1mg a week as it can take a couple of weeks for a flare to manifest - by which time you haven't a clue where it went pear-shaped.