Tapering off Prednisone

My daughter, who has PSC-AIH-UC, started to taper off prednisone about two weeks ago, 5mg every other day. Recently her UC starting acting up again and her ESR sed rate was slightly elevated. Has anyone else experienced UC acting up when trying to wean off Prednisone? Could the UC symptoms sub-side after her body started producing it again. Any feedback is appreciated.

One question of clarification. What was the amount of Prednisone she was on before they started tapering? After my liver transplant last year, when they started tapering off Prednisone, they only did 2.5 mg every two weeks. I then had labs, if everything turned out, they would reduce by another 2.5 mg. Wait another two weeks, more labs, and so on. I was just concerned that they may be reducing the prednisone too quickly. Reducing 5 mg every other day sounds like a lot. I’d certainly seek some additional guidance from a hepatologist if that be the case.


I don’t have any personal experience, but anecdotally others have had more success by tapering very slowly - tiny drops every few weeks/months.

Thank you for the comments. Started with 30mg/day of Prednisone in January. From March-June, fluctuated between 20-30mg. By the end of July, she was at 10mg/day. Then, 5mg for six weeks (Aug-mid Sept.). Past 2-3 weeks it’s been 5mg/every other day. Her hepatologist has experience with PSC-AIH-UC.

IKE, that degree of tapering sounds reasonable. Sorry her UC started acting up again.

When I had my UC, prednisone was the only drug that had any effect at all on the UC, and that is not saying much. So when I tapered down, it showed.

MY GI later told me is was life with UC and prednisone or having a colectomy.
Life with prednisone was not a good option.


Several of my son’s drs (gis and hep) predicted that once my son went down on prednisone to 20-15mgs that he would flare. He never did. While he was in the hospital I found the specific carbohydrate diet. I read Elaine Gottschall’s book Breaking the Viscious Cycle and put my 14 yr old on the diet the day he left the hospital. Later on he began taking oral vanco which i’m certain that it keeps his uc in check but also the diet without grains, lactose, and sugars (excep for honey and fruits) helped enormously. My son attributes his stable health to that diet.

And the diet isn’t easy or cheap( we went one step further and eat organic fruits veggies chicken and grass fed beef). The prep is time consuming and when my son is out with his friends and they are having pizza, he orders a salad (not easy for him either).

Gottschall was able to heal/cure her daughter 's uc and avoid having her colon removed. It’s worth having a look…and btw we are strict about the diet.


Hope your daughter feels better soon.


I’m glad to hear your son’s health is stable and the diet works for him. Thank you for the information. I ordered the book. It is certainly worth a look.