Coming down my steroids

[Shaza123]

hi , haven’t posted for a while. I have now after 2 years come down to 2 and a half milligrams per day having slowly reduced from 50 milligrams per day and I have found my rheumatoid arthritis is now getting worse especially in my hands. My rheumatologist has suggested I reduce only by half a milligram each month now. She says it’s because my renal gland is waking up.

Any thoughts on this please

[piglette]

I had to reduce to 0.5mg per month at 10mg of pred. I think your rheumatologist is right. I think she was talking about your adrenal glands not your renal glands. I apologise, but it did give me good laugh when you said your renal glands were waking up!!

[Shaza123 in reply to piglette]

🤣🤣🤣🤣 I know I proof read it to late

[piglette in reply to Shaza123]

You can actually amend your posts by clicking on “More” under the post.

[PMRpro Ambassador]

"She says it’s because my (ad)renal gland is waking up" - what is? Not RA symptoms being noticeable I trust since that doesn't really have much to do with it!

Did she say rheumatoid arthritis - or osteoarthritis? Not that the adrenal glands have much to do with OA either - but pred can make it rather more comfortable too, besides PMR.

The adrenal glands lagging behind will cause you to feel fatigued, amongst other things. But the symptoms of the illness you are taking pred for are independent of them. She is saying the right thing telling you to slow down but you may need to slow even further and that's OK too.

[Shaza123]

I’ve read that the adrenal glands when waking up can make you feel unwell

[DorsetLady PMRGCAuk volunteer in reply to Shaza123]

Can do for some, but not everybody... have you seen this link re adrenals etc -

healthunlocked.com/pmrgcauk...

[Shaza123 in reply to DorsetLady]

No I haven’t

[Nextoneplease in reply to Shaza123]

I’ve got to 6mg after nearly four years and am finding both that my hand and foot joints are increasingly sore - and that I’m very fatigued. So at least in my case, pred reduction seems to invoke both things…

Good luck! As people say on here, “it isn’t slow if it works” 😊

[PMRpro Ambassador in reply to Shaza123]

Not so much them waking up, more them being slow or not waking up.

[Bcol]

From 10.0mg downwards 0.5mg on a five week DL taper has worked very well for me.