Budesonide - how long?

[Zoom]

I was diagnosed with Crohn's in October and prescribed 9mg of Budesonide and Asacol. In December, I was still having issues so my doctor increased my dosage of Asacol. That has worked well and I haven't had any significant problems for the last couple of months. However, while reading up on Budesonide, I've found references to the drug mentioning 8 week courses of it, followed by reduction and eventually elimination of the drug. But I have already been on it for over 12 weeks with no reduction in dosage, and my doctor just told me that since in doing well, I don't need to see him for 6 months. Is it ever the case that you remain on Budesonide indefinitely? I know I've got about 6 months of refills on my prescription. I'm especially concerned because my husband and I were hoping to try to have another child soon, and I'd like to be on as little medication as possible.

 

[Sbailey]

I will be on it for 6 months. The first 3 months on 9 mg, next 2 on 6 mg and the last month on 3 mg. I am currently 9 weeks pregnant, and the doctors are ok with staying on this drug because it stays in your gut. They did make me stop the Imuran though, so now I'm nervous because I think that is the only thing keeping me from being so sick!

 

[ormsklad]

Hi

The leaflet will say 9mg 3 tabs for 8 weeks then taper. My GI did 1 mth at 9mg 1 mth at 6mg and 1 mth at 3mg. I would contact your doctor even tho your doing well as you dont want to become tollernet to the drug

 

[bushydougie]

I've been on it since October 2010 and just saw my GI in January. He's said it's fine to stay on it and I'm not seeing him again for 6 months so I'll have been on it for almost 2 years then! I've tried to come off it twice but failed. I'm now on 6mg which is working great for me. My GI has said that entocort (budesonide) is pretty safe to be on longer term as its only targeting the small bowel not the whole body like other steroids.
I also asked him about the possibilities of pregnancy and he said that the thinking these days is that it's better to keep the mother healthy than to take her off medication and become ill. He said both entocort and Asacol are both fine.
Hope this all helps
Sam

 

[Zoom]

This all does help, thanks. My GI doctor definitely didn't seem concerned about leaving me on the budesonide, but then he hasn't tried taking me off of it and seeing if I do okay either. I'm going to double check with my OB about a pregnancy with it, though.

 

[gvnrlh]

I have been on it for 13 years and am now experiencing some long term side effects. THis is fine in the short term but do not stay on it to long. tell him you want to taper off and increase your asacol if you need to . I have been on asacol and budesonide or entocort since I was 10 and i am now 23. I would look into the Specific carb diet and fixing your intestinal problems through diet! this has been the only beneficial thing for me all these years but I just recently tried it! I am now tapering off the budesonide to try and reverse the long term effects.. we will see!

gavin

 

[Zoom]

Gavin, if you don't mind me asking, what sort of long term side effects are you experiencing?

I have gotten off the budesonide temporarily as I intend to become pregnant and my drs did not want me on it while I was pregnant, but I don't know if my Gi will try to return me to it afterwards.

I started to try the SCD, but dropped it after attending a Crohn's and Colitis Foundation talk. It seemed to me like there were so many varieties of the disease that it's unclear if it would work for me, and I was a bit scared of potentially unbalancing my nutritional intake if I was going to be pregnant soonish. Has it worked for you much?

 

[tots]

I have been on this medication for two months. My Dr said 6 months. I am guessing thats with the taper? When I was in the hosp he said remicade would follow. When I saw him in the office he said he will use something eles. I take that to mean "I" will be taking something eles!!

Whatever it is- I just want to be healthy and in a healthy place!!

Lauren