Budesonide questions from a newbie

[JDTM]

Hi everyone,

First off, this question is from another part of the forum (sorry for double-posting): For those of you who were first put on Budesonide (and perhaps Pentasa) when you were first diagnosed with Crohn's, how long did it take you to start feeling better? I know that everyone's experiences will be different, but I just want to get a sense of what may be normal. I'm not sure when these things are supposed to "kick in," exactly. I'm almost a week into the medication regiment, but I have yet to feel any significant improvement.

Second question (with some backstory): So, I have symptoms that are in my stomach (erosions, gastritis, a small hiatal hernia, used to have ulcers before clobbering my gut with omeprazole, etc.). It was the first thing that brought me to the hospital, and I've been dealing with stomach flare-ups since late May. After reading a bunch of the forum over the past week, I've learned that while a corticosteroid like Prednisone can affect nearly everything, Budesonide is designed to release in the small intestine near the terminal ileum, keeping the effects localized. Does this mean that Budesonide is not going to help my stomach pains? (Or will the Pentasa eventually help with that, maybe?) My colonoscopy shows inflammation in the ileum, but there's also some moderate inflammation in my colon and the above problems in my stomach, and I'm wondering if the Budesonide can have cumulative benefits for everything affected by Crohn's, or if it's just working on that one specific spot.

(After what I've read here, I'd rather not hop on Pred... but then again, if it stands to offer my stomach some relief... :shifty-t

 

[ThatsWhatSheSaid]

Hmmm, no one ever responded to this. I personally love prednisone, but that is because it seems to be the only source of relief I know. I know this is from a while ago, but what did you end up doing? How is everything going? Why the prednisone hesitations?

 

[Jennifer]

Entocort can take up to a month to kick in. It spreads throughout the body and can help with joint pain.

Sorry for not seeing this thread! I feel like such a terrible monitor! D:

 

[ThatsWhatSheSaid]

No don't be silly, you're wonderful!! There are more issues at hand with everyone than time to respond! I just figured if I responded to it it would boost it back up. Even if JDTM feels he has answered his question I'm sure others have similar concerns.

 

[JDTM]

Awww, thanks you two! Here's the Cliff's Notes version of what happened since I posted this.

A few days later, I was pretty hysterical and upset. Partially convinced that it was the budesonide's fault, I got off it after calling the on-call gastroenterologist at the hospital. When I followed up w/ my doc, she said she was sorry and that she was glad she didn't prescribe prednisone instead!

Fast forward a little bit, and even off the drug, I was still getting upset, and after some therapy and whatnot, I came to the conclusion that I was just having a rough time dealing with my diagnosis and the uncertainty associated w/ Crohn's disease. I tried a trial run (under my doctor's supervision) of a low dose of budesonide -- didn't do much, but it didn't seem to give me awful side-effects either. After a few more tests (MRI, blood, etc.) to see what exactly we were dealing with, it was decided that I'd give a full course of budesonide another shot. Took a full dose for a month, and now I'm tapering off -- if all goes well, I'll be off it in about a month and a half.

I feel like it's helping, but I'm not quite back to "normal" just yet, and I still have the occasional stomach pains. Thinking about asking my doctor about LDN and staying on Pentasa once I taper off the budesonide.

My reluctance to try prednisone had more to do with side effects than anything. I actually was on a short course of pred for about 4 days when I randomly broke out in crazy hives in 2010. (Starting to wonder if that was somehow related now... hmmmmm). It knocked the hives down for sure, but I couldn't sleep and I had to piss like a racehorse every hour on the hour. I certainly had plenty of energy though!