Tapering off Prednisone

    • Anonymous
      January 15, 2008 at 9:29 am

      Hi everyone, I’ve been on 60 mg of prednisone a day for 6 weeks. My dr. told me to bump it down to 50 mg a day. I am seeing him on Friday so I will inquire then about a tapering schedule, but in the meantime, can you guys share how you successfully tapered off prednisone, how much you reduced the dosages and how often?

      I am ready to be off this stuff. I don’t much care for the frog face and weight gain or increased facial hair growth, but I am really worried about thinning skin. My skin is really thin and pale to begin with. Has anyone had to deal with this from pred? Is it permanent?

      Thanks, Dee

    • Anonymous
      January 15, 2008 at 2:01 pm

      My neuro. is a believer in pulse dosage so rather than daily dosing so he had me go from 500mg twice a week down to 450mg twice a week for 2 months, then starting next month 400 mg twice a week for 2 months, then see him sometime during that period and take it from there.

    • Anonymous
      January 15, 2008 at 3:10 pm

      Emily was on 20 mg a day at her highest dosage. We tapered her off by 2.5 mg per week. Meaning that I gave her 17.5 mg a day for 7 days then 15 mg a day for a week then 12.5 mg a day for a week, etc. Once she got down to 10 mg a day we went down to 5mg the next week then 2.5 mg for 3 days then she was done. It took about a month & a half to get her completely off and she was only on them for about a month & half before the weaning began.

      It’s very important to wean slowly off of steroids because while taking them your adrenal glands shut down & the steroids are what release the hormones into your body normally made by the adrenal glands. Weaning slowly allows your adrenal glands to start working again.

      There are many unwanted side effects that go along with taking oral steroids. We were very concerned about weight gain with Emily as well. She gained 10 lbs in 7 weeks…that ALOT for a 5 year old!

      From what I’ve read most of the side effects will go away after getting off of ‘roids. I’m not sure about facial hair growth or thinning skin but I do know that the round face went away about 2 weeks after Emily being completely off the ‘roids. She never lost the weight but just hasn’t gained any in about a year. For the last year she’s looked like a heartier kid (not chubby just heartier) but now she’s back to her skinny little self.

      Good luck with the weaning. Remember slow & steady wins the race!


    • Anonymous
      January 18, 2008 at 2:51 pm

      Hi all, thanks for your responses. I saw my Neuro today. He’s having me do 2 weeks at 50 mg and then two weeks at 40 mg, then down to 30 mg. He said, once I was on 30 mg, it would take months to get down to a 5-10 mg daily dosage. And even then, I might have to be on a 5-10 daily dose for life. Some people just can’t ever get off the steroids. I wonder if the adrenals just stop functioning after a while and can’t start up production on their own? Or is it the extra cortisol is needed to keep the disease at bay? I will have to ask next time. I forgot to ask about pulse dosing, will have to ask next time about that too.

      Of course I’m worried about the weight gain and all the masculinizing effects, but he’s got me worried about bone loss. Wondering if being on a low dose of 5 mg for years will cause bone loss. Does anyone know?

      He was really pleased with my progress, which I knew he would be. When I was there last time, I could barely walk. Even had some small reflexes. Praying it continues.