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I am 68 and was diagnosed with collagenous colitis 5 1/2 years ago. Was put on Budesonide which helped a lot. Did the gradual taper from 9mg to 6mg to 3mg and then none. Did ok for a couple of weeks or so but relapsed and did the whole routine again with an even longer taper. Relapsed again and have been on 3 mg daily ever since.
Have read that long-term use is ok, but wish I could get off it completely. My gastro dr is pleased with my status and doesn't want to mess with the status quo. She said if you go off it and then go back on, it might not be as effective. I did some research and found that stated - the efficacy can decrease.
I am wondering if anyone has experience with going off Budesonide and then back on again, and are there other long-term Budesonide users out there. I have not noticed any concerning side-effects while using it.
Replies to "I am 68 and was diagnosed with collagenous colitis 5 1/2 years ago. Was put on..."
Hi Sarapa,
Once I was prescribed Budenoside 3 mg, I had a rapid (3 days) good response and saw no reason to quit. I have been on it over a year, and don't plan to stop. Thank you.
Margot
I did. However, as I stayed on it for years, we accidentally found it was damaging my adrenal glands. So, cannot take it again . Just had 1st Remicade Infusion. You can discuss with your providers
Hi Sarah,
I guess I am a Long-term Budesonide user.
I developed frequent diarrhea about 2 years ago, had a colonoscopy, was diagnosed with microscopic colitis (October 2023) and was put on Budesonide 3 mg daily. It was amazing, and I had almost immediate relief. I have been on this same dose daily since that time. I have occasional short term flares (1 - 2 days) but recover quickly. I usually have 1 BM in the morning, normal type, and am free to live a bathroom-free day after that. The only side-effect I have is some bruise-type red areas like a bruise, but without any pain, on my arms. I was told this was because Budesonide is a prednisone. Since it does not bother me, I have not tried to get off B. but just live with it. Margot (85 yo F)
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My doctors (3) also said, don’t worry, you can be on B for the rest of your life. However, there is not a single clinical trial supporting that claim. The longest trial I could find was one year. In my case, I had a 12% bone density loss in two years on a very low maintenance dose (1.5mg). I am now off completely thanks to a gluten free plant based diet. Don’t give up. Find the root cause. Try a functional doctor. Keep searching!