Microscopic Colitis

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.

I have been on and off Budesonide for over 24 years with microscopic colitis. Typically I'd get a flare every two years. For most of that time the effectiveness did not decrease when I went off and on. I was on the 9mg for 2 weeks, 6 mg for 2 weeks, then 3 mg for 2 weeks, and it worked.

However, during the last couple years I've been experiencing more frequent flares and the Budesonide has lost it's effectiveness. I've been on 9mg per day since January with little relief, and it's frustrating and worrisome. So yes, it appears Budesonide can lose it's effectiveness.

Hello all, I am a 66 yo female diagnosed with Lymphocytic colitis 10/2023. Previously diagnosed and treated for IBS-d for 10 years without relief. I became very sick 1/2023 with cramping, liquid stools 7-8 x day preventing me from leaving my home. My GE refused to do another colonoscopy convinced it was IBS-d. After months of this, incidental findings on CT of colon suspicious of inflammatory colitis my GE referred me to another GE in the group who did "difficult cases". Pathology was Microscopic Lymphocytic and started on Budesonide, 12 weeks. This quickly worked. Unfortunately, off Budesonide for 1-2 months I relapsed. I have relapsed 3 times, requiring Budesonide which agan worked. I asked for low dose Budesonide 3 mg/ day which stopped symptoms while on maintenance. My primary GE refuses to believe the pathology findings and I have lost trust in her management and those in practice
I have tried bile sequesrtants, diet therapy, stress reduction, pepto unhelpful. I am reluctant to try biologics due to poor efficacy and serious adverse effects and co existing medical conditions. I am asking for input, advice from the group or moderator. I am very depressed, fatiqued, isolated and family is non supportive so I thank you in advance.

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.

Hi Deb
Thank you for your reply to my first letter. It is good to know that someone else has had a good response to Budesonide. You are the first person to say they are using the Bristol Stool chart. I find it very helpful, and so does my GI Doc. How much Budesonide to you take daily? I take 3 mg. daily and have never taken more than that. Keep up the good active life! I am 85 and just led a kayak trip 2 days ago - so much fun and good exercise!
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

To all with microscopic colitis please be patient. I had this experience and Busesonide. It truly is the answer. It works differently on different people. You need to take two or three every morning for at least two weeks or maybe more. Then take it for a month then slowly taper off if having success. Problem is the constipation side affect needs citrucel to counter react. If you play with the dosage for a month or so then it heals the colon. If watery stools are there in the night then in the morning take the Busesonide. More than one. Do that until stools are firmer. As soon as constipation starts take less and start citrucel. It eventually heals. But it does take patience and persistence. I now take citrucel daily and it helps a lot.

https://www.microscopiccolitisfoundation.org/
This organization offers much info on microscopic colitis, which is such a complex and frustrating disease to manage.

Hi, Margot!
I started out at 9 mg a day and eventually landed at 3 mg daily as a maintenance dose. I’ve never kayaked but it looks like fun. I’m convinced that staying active as much as one can helps tremendously with health issues!