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Microscopic Colitis Relapse Rate Question

Digestive Health | Last Active: 4 hours ago | Replies (5)

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@debhammel

I have been taking Budesonide for just over a year for Collagenous Colitis and experienced relapses during attempted tapers from 9 mg to 6 mg. We took the last taper attempt more gradually, alternating 6 mg and 3 mg doses and I was able to get to a 3 mg daily dose this past September. Since then, I've had two flares that I managed with Imodium and lasted no more than a day. My GI considers me in "maintenance" right now, with the daily 3 mg of Budesonide and 1/2 of an Imodium tablet daily at night. I avoid gluten, minimize alcohol consumption to a small glass of wine on weekends and only with meals, and am very careful with raw vegetables. I also need to watch beans - they will set me off unless I soak dried beans for 24 hours and then cook them so that they are very soft. My recent retest for fecal calprotectin showed that my inflammation is now in "normal" range. All in all, I'm grateful. My test GI appointment is in March and we will likely address whether to attempt to get me off Budesonide then.

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Replies to "I have been taking Budesonide for just over a year for Collagenous Colitis and experienced relapses..."

Thank you for sharing. I was able to get to 3mg every other day and stayed there for a year before getting off completely. My only caution is to challenge the doctors who say Budesonide is safe for long-term use. They have no clinical proof of that beyond a couple of years - only anecdotal evidence. In my case, I did a bone density scan when I started the drug and another after two years. I lost 12% of my density during that short period which is significant and if allowed to continue, dangerous. Make sure you are monitoring for that if you decide to stay at 3mg for the long term.