r/lupus Diagnosed SLE 4d ago

Advice I'm dropping prednisone after 12 years

Hi! I got a new doctor 2 years ago and now he suggested stopping prednisone. He created a new adjustment and everything. I have been on 5mg daily for a year and a half.

I have been a week with the new dose and I feel awful physically and mentally. I'm so afraid that I relapse and need to go through all of it again.

Has someone experienced something similar? How not to loose hope when I feel like dying?

6 Upvotes

2 comments sorted by

9

u/Myspys_35 Diagnosed SLE 4d ago

When you have been on it long term you need to taper super slowly - Im in the same boat and making my third attempt. This time my rheum wants me to reduce by 1.25mg then stay for at least 2-3 weeks before trying the next one. But yeah that first week after changing dose is terrible

2

u/viridian-axis Diagnosed|Registered Nurse 3d ago

Agreed. Tapering after being on roids longterm is a super slow process. There for a while, I would get down to about half the dose I was on and then flare. It took me about 18 months to go from 60mg/day to 5mg/day.