Tapering advice please!

[Mariemcdo]

Any advice is very welcome. I have tapered down to 1mg every other day and wondering what the advise is from there? My GP is lovely but does not have the knowledge required and I have often found much more support and information on this site so please if you have any advice at all I would welcome it. Also wondered how would I know if my Adrenals have kicked in and working normally? My inflammation levels are very low 4 & 3 so it maybe that the Adrenals are doing their work? I want to be sensible but part of me just wants to get off the Preds!

[PMRpro Ambassador]

I would just start adding an extra day with no pred between your 1mg days. Or, if you have white uncoated tablets, start by moving to 1/2mg on some days before extending the days with none. Does that make sense? But do be warned - there are people who continue to take 1mg like you are now and are fine but a couple of months after stopping pred find symptoms returning! 1mg is such a tiny dose that there are some doctors who let patients stay there for a long time.

If you are feeling well and reasonably energetic I think you can assume your adrenal function has returned! It doesn't have any effect on the inflammation levels so that isn't really an indication.

How long has this taken you? You and your GP seem to have done well.

[Mariemcdo in reply to PMRpro]

It’s been 13 months.... feels like a very long time but I know that it’s actually a very short when I read up personal stories and years of taking Preds.

Thank you for all of your advice x

[DorsetLady PMRGCAuk volunteer]

Hi,

I tapered down from 1mg to 0.5mg using my plan and then from 0.5mg using the DSNS method. I ‘knew” my GCA gad gone into remission, but was not going to take any risks after all the time I’d been on Pred.

I know your situation is different, but the more slowly you can come off Pred the easier it is for your body, and probably the less likely to cause a hiccup. However, just ensure you have a few tablets around in case things go pear-shaped.

Good luck.