Long term, high dose prednisone tapering
Questions for those that have been on high dose steroids long term (over a year or more and on 20mg/day or more of prednisone or equivalent).
- How long did it take you to taper off to 10mg or less per day?
- Did you find you had to taper in smaller amounts than what is recommended?
- Were you able to stop them completely?
- If not, what low dose did you get to and stay on?
- Any tips/tricks to avoid a flare?
Background: I have a current dx of MCTD. My worst symptoms are pain, swelling, fatigue, alopecia, photosensitivity and leukopenia as well as being borderline anemic for a long time. I’ve been on 15-50mg/day of prednisone for well over 2 years now (I think I may be closer to 3 years). It’s been a huge struggle to find a medication that works and that I can tolerate. Steroids have kept me partially functioning while trying to find a steroid sparing treatment. The steroid side effects are too much and I need to get down below 15mg/day, but 10mg or less is my goal.
I got down to 13.5mg/day while on MTX last January, but it didn’t last long as I had to stop MTX and flared shortly afterwards. Currently I’m having success with Orencia injections, so I started a prednisone taper again as per my rheumatologist. I can only drop by 1mg max every 2 weeks when I’m in the 15-20mg range. And only 0.5mg every 2-3 weeks when I get below 15mg/day. Rheumy says this is slower than most, but tells me not to push things. Personally, I’d go even slower if I wasn’t worried about my long term steroid side effects.
I guess I’m just curious if anyone else is like me and has to taper at a turtles pace and has been on steroids for ever? Thanks!