Another pred cautionary tale

[diana1998]

After yesterday's discussion, I heard from my friend last night that her friend who's had pmr for just over a year, had just come off her pred. She'd started on 15mg, been totally fine and continued to play golf, travelling abroad etc and not a twinge. However, on going down to zero obviously far too fast, pmr has returned with a vengeance and she's back to where she started on 15mg. And again pred has worked it's magic and she's back fine. What bad advice she must have been receiving as maybe just going up to 5mg might have worked.

[PMRpro Ambassador]

A lot of doctors just don't understand that and it is a common reason for patients being on too much pred for too long.

[diana1998 in reply to PMRpro]

Yes indeed. When I was reduced far too quickly by l rheumie to 13mg and had a horrendous flare in my spine, I took an extra 2mg off my own bat as I couldn't move and pain subsided very quickly. I then reduced extremely cautiously staying on each drop for 4-6 weeks. If the Dr had put me back on my original dose, I'd have been back to 30mg!

[cherrysteps in reply to PMRpro]

I worry that 5 years is too long

[PMRpro Ambassador in reply to cherrysteps]

I've been on pred for 15 years - haven't crumbled yet.