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Hi Sarah (and Margot)
I have been lucky as well. Had 6 weeks of diarrhea in December and then was diagnosed with MC. Tried Budesonide and the 9 mg. starting didn't do well for me. But when I had problems again, they started me on 6 mg and tapered to 3. I've been on 3 since mid June with really no significant side effects. I pretty much eat what I want and am doing well overall. I am a little on the constipation side, but have BM every day and it's not significant. I'm afraid to go off it and don't want to mess with it. In my initial reading I remember someone saying they went off, had another flare, and then the Budesonide the 2nd time didn't work. There's not much about long term use. I guess we are guinea pigs. Is anyone else on 3 mg long term? -Jan 65y
Replies to "Hi Sarah (and Margot) I have been lucky as well. Had 6 weeks of diarrhea in..."
I was diagnosed with Collagenous Colitis. It took forever. I had the diarrhea for almost a year. Budesonide stopped it. I finished the regiment and it came back immediately. Continues for another 6 weeks and finally went off of it and all was calm for about 4 months and the watery diarrhea was back. That has repeated and I only get 3-4 months in between. I hope this isn’t going to be the rest of my life.
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I was diagnosed in October, 2023 and started Budesonide then. After two failed attempts to taper off of it, I am continuing with a maintenance does of 3 mg daily for the foreseeable future. I am fine with this as it is working for me and I have had no side effects at all.