I am looking for others diagnosed with microscopic colitis

@mkzpony Have you had any side effects from budesonide? How long were you on this medication?

I have been on and off Budesonide for the last 23 years, as flares occur (and they occur quite often). It worked miracles for me, usually puttingme into remission in about 6 weeks. Absolutely no side effects, and my gastro says it's a low risk drug. The bad news is that sometimes it stops working as effectively over time. This happened to me this past year. I had to stay on a high dose (9 mg) for about 8 months until I SLOWLY healed. Now I'm on a permanent maintenance dose of 3 mg per day. The great news is that I'm maintaining remission and no side effects.

mollygirl3719, Your story is similar to mine, except I have had MC for only 8 months. Twenty three years is a long time. I also tried to get off budesonide after my 90 tapering course. The symptoms returned within a few days. I am now on 3mg budesonide per day with symptoms well controlled, until I eat something with too much fiber or indulge in too much sugar. I have been gluten free for a while, but will probably start introducing gluten as I start baking my sourdough bread again.

@mollygirl3179 I’ve had MC for 25 years now and I have always refused to take Budesonide. I’m surprised your gastro told you it was low risk. It isn’t after a certain age. While it’s not as bad as prednisone, it still greatly weakens your bones and causes the loss of bone density. I now have osteoporosis and I am constantly breaking bones. Also, in my teens and 20’s I was given far too much Prednisone.

@ndough Wow, I'm sorry to hear of your bone problems. That's not good.
I was concerned, also, about bone loss after reading comments in this forum, so I got a bone density test this year. My bones were as dense and strong as ever. I will continue to monitor my bones as I get older. Osteoporosis doesn't run in my family so I think genetics plays a role.

@piemonte I've actually had MC for 25 years, as well, but I only used Budesonide for 23 years. The docs had to try all the other treatments before I was put on Budesonide. This disease is really life altering and I feel for you!

@mollygirl3179 I would say you don’t have a life.

@mollygirl3179 It doesn’t run in mine as well. As I said, mine was caused by a lot of steroid use (prednisone mostly) when I was in my teens and 20’s. Being lactose intolerant didn’t help.

@ndough
I already had Osteoporosis when I was diagnosed with MC. I am worried about my bone density so I've weaned off Budesonide so I'm taking 3mg every 3 days. So far, so good. But what will happen to my bones? There aren't any alternatives. (My GI doc is not at all attentive. He never told me about the bone risk. I'm 65 with Osteoporosis!)

@janstur I understand about how you feel about your GI. I have finally been referred to a female GI. I hope she is more attentive. In the 25 years I’ve had GI’s, every single one of them has turned out to be as misogynistic as the last. My husband hasn’t had a problem with any of them. I guess the best thing to do is keep an eye on your bone density. There are positive things you can do to help. Take vitamin D3. My PC has me taking a lot, but you need to discuss that with your doc. Start doing core and weight bearing exercises (like walking every day). Sit in the sun for 15 minutes every day. That’s all it takes to get your daily dose of vitamin D. Unfortunately, I started breaking a lot of bones and my last spinal X-ray showed that my bones looked like lace…you could see holes through them.