Budisone (Entocort) Withdrawal with Ulcerative Colitis

I have Ulcerative Colitis and Crohns. I was diagnosed about 3 years ago. My gastroenterologist doctors had me on Asacol and Budisone (Entocort). While I felt OK most of the time, a recent colonoscopy showed a recurring stricture and significant ulcers and inflammation. Enter AZT. I tolerated it well, so I decided to wean myself off of the Budisone, 9 mg to 6 mg over 3 weeks, then 6 mg to 3 mg for 4 weeks, then 3 mg to 1 mg for five weeks. After being off of the Budisone for a week, I started to feel nauseous. Then the gas and cramping started. My gastro doctor put me back on 6 mg of Budisone. All side affects have disappeared.

I would appreciate your sharing your Budisone (Entocort) withdrawal symptoms. I had weaned myself off of it before without side affects. This second time made caused me to ask my gastro if he wanted to trade gastro parts.

Submitted by “SdanL” in the Colitis Venting Area

(A previous Story about Budisone (Entocort) from another person with ulcerative colitis)

2 Responses to “Budisone (Entocort) Withdrawal with Ulcerative Colitis”

  1. Paul WilloughbySeptember 28, 2011 at 3:16 am #

    I was on it for a short time. It is a safe steroid. It did not work for me because of where my UC is – distal. Man, Crohns and UC – that has got to be hell. Hang tough.

    Paul

  2. Vicki ThomasSeptember 28, 2011 at 3:32 am #

    I was on Budisone and had success with it until I tried to withdraw from it. I followed the weaning protocol provided by my doctor and about two weeks after having completed the withdrawl I was in a full-blown flare (I was in a remission previously). My doctor told me that some people can’t tolerate withdrawing from steroids and what I was in was a steroid withdrawl flare…. This flare was so bad that I ended up in hospital and lost close to 20 lbs. I no longer take steroids because I can’t tolerate them – apparently this is quite common. I was on Imuran but this made me very ill (white blood cell count dropped, hair fell out, extreme fatigue, etc.) – so now all I’m on is Asacol and everything is working out just fine.
    My experiences with steroids and ulcerative colitis have definitely not been pleasant….

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