Anybody diagnosed with microscopic colitis?

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

I was diagnosed with CELIAC 6 years ago, to follow MC, I have been prescribed Budesinide, of which the cost in the USA is $1050.00/3 months, I sent my prescription to Canada, now I pay only $95.00 for 3 months, and it is working awesome!!!!!!!!!!!!!!!!!!!1

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

I am looking for others diagnosed with microscopic colitis. I'm new to the group and the condition. Any help or information about what my future holds would be appreciated.

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.

@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.

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.

@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!

@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.

@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.