← Return to PMR - What do you wish you had known . . .

Discussion
Comment receiving replies
Profile picture for cyndip @cyndip

Like others, I wish I had known about the trajectory of the prednisone taper - specifically, that (for me anyway) the last part is the trickiest. I had imagined things getting easier and easier as I finally got to lower doses, and that just wasn’t the case. I did much better when, after my second relapse under 10 mg, , my doc and I agreed that I would manage my dose using a slow taper schedule I found on this site, just keeping him informed - instead of having him direct every step. Rheumatologist I finally got in to see after waiting almost a year for appointment agrees. Down to 1 mg and feeling great so fingers crossed. I just had no idea getting off the prednisone could be so tricky. That drug was a lifesaver but it certainly has issues! I had no idea in the beginning.

Jump to this post


Replies to "Like others, I wish I had known about the trajectory of the prednisone taper - specifically,..."

@cyndip Which taper did you use, please?

@cyndip. Same here, I have managed to come down to 1mg. My weight is still fluctuating though and now my eyes are puffy and the eyelids are drooping . The main issue I am having at the moment is, it is playing havoc with my thyroid. I was under active now I am over active . So I have to wait three months to see what happens.
Rheumatologist I have not seen one at all . I have been on prednisolone for over 2 years . I really can't wait to come off them.
Thank you for sharing your experience , it really does help to know we are not alone .