Anybody diagnosed with microscopic colitis?

Microscopic colitis (9 years) is tricky. I also have Celiac Disease (16 years). I was on Budesonide 3 mg for a couple of years and it controlled flares but my hair and skin thinned a bit (72 yo) so have been off it a couple of months. Consider an elimination diet to see if anything new might be twerking your GI tract. Main things with MC are to get enough rest and control stress. I'm sensitive to gluten, legumes, NSAIDs, and now potatoes and even decaff coffee.

@kayabbott I can’t believe your doctor put you on Budesonide at your age. (I’m 73). It is not recommended for women over 60. Especially if they also have OA, osteoporosis, immune disorders (MC is an immune disorder - Budesonide was developed for ulcerative colitis), etc. It’s a pretty heavy duty steroid. I won’t take it…my bones are already brittle enough.

I have lymphocytic colitis and had my first flareup in May 2024. I have been in remission for about 18 months. We traveled to Sicily into Malta and are now in Portugal and I started having the runs about five days ago. Only about 1-3 a day, but I decided to start taking the budesonide this morning. How long does it usually take for it to kick in? I’m only about 100 pounds and very sensitive to medication so I was wondering if just starting with two a day would help. This is my first time taking it and brought enough for about 6 weeks.

@pichulita

I tried going off Budesonide to no avail. I had to start the tapering cycle of 9mg/day for 90 days, then 6mg/day for 60 days, then 3mg/day for 30 days. For me, the diarrhea stopped after the first dose of 9mg/day and remained under control throughout the cycle.

I’m on 3mg/day maintenance dose. I’m doing fine.

That doesn’t completely answer your question but I hope the lowest dose will work quickly for you.

@piemonte Thank you for the info. I am crossing my fingers (and toes) hoping this will work with no side effects.

@pichulita
I just read my message again and realized I made a mistake about my budesonide protocol!
I was on a 90 day course, 30 days of 9mg/day; then 30 days 6mg/day; maintenance of 3mg/day.

The doctor really wants me to wean myself off. I tried that last year. It didn’t work, So I started the tapering protocol all over again. I’m now down to 3mg/day and it’s working.

The side effect is poor calcium absorption which can lead to loss of bone density. I had a scan 6 months ago which revealed osteopenia. My GI doctor told me to do strength training to help with bone density. He wants me to have a bone density scan annually. I’m signed up with a personal trainer who will work with me once a month to coach me on exercises to do twice a week at the gym.

That’s a lot of info! I hope you have a good trip. I’m going on a Rhinestone River cruise in September. I hope my budesonide is still working.

@piemonte
Thank you so much for your responses and ESPECIALLY for the hugs.
So, have you decided to stay on 3mg indefinitely? I would like to suggest taking at least 112.5 billion Visbiome and also Akkermansia…..these are solid choices for people like us. Have a great week. Sending a hug back.

@pichulita
I just read my message again and realized I made a mistake about my budesonide protocol!
I was on a 90 day course, 30 days of 9mg/day; then 30 days 6mg/day; maintenance of 3mg/day.

The doctor really wants me to wean myself off. I tried that last year. It didn’t work, So I started the tapering protocol all over again. I’m now down to 3mg/day and it’s working.

The side effect is poor calcium absorption which can lead to loss of bone density. I had a scan 6 months ago which revealed osteopenia. My GI doctor told me to do strength training to help with bone density. He wants me to have a bone density scan annually. I’m signed up with a personal trainer who will work with me once a month to coach me on exercises to do twice a week at the gym.

That’s a lot of info! I hope you have a good trip. I’m going on a Rhinestone River cruise in September. I hope my budesonide is still working.