Ulcers and erosions in small intestine

[Stressedmom]

Just got results of VCE via portal and it found erosions and ulcers in small intestine. Dr. will discuss more at our appointment. I assume this means Crohn's? He doesn't take NSAIDs ever so that could not be the issue. She called in a script for entocort. Any experience with this? Advice? I see it's a steroid specifically for the intestine. I am excited to have him try it and see if it actually helps. We have been at this so long. It would be a relief to see some improvements. If your child improved on this, how long did it take to see results? Any side effects?

 

[Maya142]

Entocort is generally well tolerated but if I’m remembering correctly, it works only in the ileum and the ascending colon. I’m assuming his ulcers and erosions were found in the ileum and not the jejunum or duodenum? My daughter has crohns in the terminal ileum and all through her colon (though it’s worst in the TI and ascending colon) and has been on it many times. Typically it’s used with a maintenance med since those take time to work. She has been put on it for flares multiple times and it’s always helped her (except one time when it didn’t do enough and we had to switch to Prednisone). She says it’s always worked relatively quickly but she hasn’t been on it recently so she can’t remember how quickly and neither can I (sorry, I know that’s unhelpful). I do know prednisone works in 2 or 3 days for her and I think Entocort took longer. I do remember it being very helpful when she was diagnosed, particularly with abdominal pain.
Hopefully it will work well and quickly for your son!

 

[Stressedmom]

Entocort is generally well tolerated but if I’m remembering correctly, it works only in the ileum and the ascending colon. I’m assuming his ulcers and erosions were found in the ileum and not the jejunum or duodenum? My daughter has crohns in the terminal ileum and all through her colon (though it’s worst in the TI and ascending colon) and has been on it many times. Typically it’s used with a maintenance med since those take time to work. She has been put on it for flares multiple times and it’s always helped her (except one time when it didn’t do enough and we had to switch to Prednisone). She says it’s always worked relatively quickly but she hasn’t been on it recently so she can’t remember how quickly and neither can I (sorry, I know that’s unhelpful). I do know prednisone works in 2 or 3 days for her and I think Entocort took longer. I do remember it being very helpful when she was diagnosed, particularly with abdominal pain.
Hopefully it will work well and quickly for your son!

This post is helping me come up with some questions for our appointment with the doctor. Thanks. At scopes our previous doctor found inflammation at the terminal illeum, but biopsies were normal. MRE found some wall thickening and other signs of inflammation the radiologist thought was most likely at jejunum and did not see anything at ileum, but someone here said I would trust the doctor actually seeing it over the shadows and hard to read shapes on the MRE. Radiologist said could be transient or early Crohn's. Very curious to find out where ulcers and erosions were found and if they are calling this Crohn's yet. BCH doctor who did second opinion report said, even with non-specific inflammation, he has seen symptomatic kids respond well to Crohn's meds. If it's not yet Crohn's he said to monitor because he has seen kids with a similar presentation to our son develop it over the years.

 

[Scipio]

Entocort is a milder steroid than prednisone. It's good for inducing remission in the small bowel and first part of the large bowel. A different formulation of the same drug (brand name Uceris) is used for ulcers and inflammation that are farther downstream in the large bowel.

Due to its milder nature, Entocort can often be used for longer periods than prednisone, but it is still not a good long-term maintenance drug. A switch must eventually be made, usually to an immunomodulator and/or a biologic. Long term use of Entocort will eventually result in all the nasty side effects the predisone produces.

 

[Stressedmom]

Entocort is a milder steroid than prednisone. It's good for inducing remission in the small bowel and first part of the large bowel. A different formulation of the same drug (brand name Uceris) is used for ulcers and inflammation that are farther downstream in the large bowel.

Due to its milder nature, Entocort can often be used for longer periods than prednisone, but it is still not a good long-term maintenance drug. A switch must eventually be made, usually to an immunomodulator and/or a biologic. Long term use of Entocort will eventually result in all the nasty side effects the predisone produces.

This is helping me get into the right mindset for the appointment. It's good to hear it's a milder steroid because our son seems to be more likely to experience side effects with meds. Glad he can be on it for a while if it helps, even if it's not a long term solution.

We got over the first hurdle. Dr's office said sometimes it's an ordeal to get insurance to cover, but our pharmacist checked and said our insurance will cover with reasonable copay. Now they just have to get it in stock.

 

[Jo-mom]

My son was on Entocort before he went on Remicade - and it did help him some. He didn't have any side effects. He was weaned off of it once Remicade was working properly. He was on it for a few months.

 

[xmdmom]

My son was treated with prednisone for 6 weeks at Crohn's diagnosis (ileitis age 19) and then switched to budesonide= entocort 9 mg a day. He was on it (6 mg or 9 mg) for a a year or slightly more which was longer than they use it for and retrospectively too long. (The other choice they gave us was Azathioprine. They did not offer Remicade. This was 10 years ago.) It became less effective after several months. It did prevent a full relapse but he was lower weight, mildly anemic, fatigued and had mildly elevated CRPs during the time he was on entocort. In addition, he had a dexascan that showed osteopenia 8 months after starting. He didn't have a beginning dexascan. There were no other side effects that I can recall. He did not look Cushingoid (the way people look after taking prednisone.)

I think it can be a reasonable medicine for a short time but I do attribute the osteopenia to it so I wouldn't want to use it for too long AND I would pay attention to see if there is real remission or just improvement. When my son switched to Remicade, he went into a real remission, he gained weight and energy and was no longer anemic. It was a night and day difference.

Best wishes.

 

[Stressedmom]

My son was treated with prednisone for 6 weeks at Crohn's diagnosis (ileitis age 19) and then switched to budesonide= entocort 9 mg a day. He was on it (6 mg or 9 mg) for a a year or slightly more which was longer than they use it for and retrospectively too long. (The other choice they gave us was Azathioprine. They did not offer Remicade. This was 10 years ago.) It became less effective after several months. It did prevent a full relapse but he was lower weight, mildly anemic, fatigued and had mildly elevated CRPs during the time he was on entocort. In addition, he had a dexascan that showed osteopenia 8 months after starting. He didn't have a beginning dexascan. There were no other side effects that I can recall. He did not look Cushingoid (the way people look after taking prednisone.)

I think it can be a reasonable medicine for a short time but I do attribute the osteopenia to it so I wouldn't want to use it for too long AND I would pay attention to see if there is real remission or just improvement. When my son switched to Remicade, he went into a real remission, he gained weight and energy and was no longer anemic. It was a night and day difference.

Best wishes.

It is helpful you mentioned these things. Our son is on a high dose of another med for a different issue that can also cause osteopenia so I will definitely advocate for a med switch if she plans to have him on entocort for a long period of time.

 

[Maya142]

My daughter also developed issues when she was on Entocort for over a year (maybe even a year and a half) - she already had low bone density but it got worse. She was also not in remission despite being on Azathioprine and Entocort. Now she’s on Remicade and MTX and her last scope was clean!