Entocort/budesonide question

[JDTM]

This is for those of you who have had success with Entocort/budesonide. I've been on 9mg of budesonide for a little over 3 weeks now, and I thought I saw some steady improvement for the first two weeks or so. After that, however, I experienced a downward trend for the past week and felt worse than ever over the weekend, and only now am I starting to feel somewhat better (and that's a relative term -- I still feel pretty crummy). If you've had success with budesonide, have you ever experienced any major bumps in the road early on, only to have it pick up again and work for you? Or is this proof positive that the budesonide isn't doing the trick for me, and I should look into different treatment options?

I'm going back to my GI in a week, but I thought I'd ask around here first about your experiences.

 

[sfmreb2]

I'm on Entocort/budesonide and I also started about three weeks ago. I had a few problems last week, but it seems to be back on track. Give it the full month. I think it is slower to act than Pred is but is a lot easier on the mind and body. The last time I tried it I took 9mg for a month, then 2 for a month and then 1 for a month. Shortly after stopping it was back to the "D". This time my GI is trying 9mg for a month them 6mg for 4 months, then 3mg for I'm not sure how long. This Crohn's thing is a very bumpy road, hang in there and give it some time.

 

[Paladin]

Is it being used as an internal lavage or to be taken orally?

If as a lavage/enema, the trick is to retain the fluid mix as long as possible
which is a battle with natural response to anything being so injected.

 

[JDTM]

Hi Paladin -- I'm taking it orally as enteric coated pills. My disease is located in the ileum, so if I understand things correctly, an enema-based treatment isn't an option for me. If I had problems in the descending colon, then it'd be a different story. Thanks for the help though.

sfmreb2 -- thanks for the advice. I initially struggled with budesonide right after my diagnosis: 1 week of 9mg followed by a freakout and full stop... later, we tried a low dose of 3mg for a couple weeks, then two weeks of tapering at 3mg every other day. Didn't seem to do much at that point, but once I got my mental issues under control (sorta), we tried 3mg for a while again to see if I could tolerate it (no prob), then stepped up to 6mg for another week (again, no prob), then gave the 9mg a proper second try. Again, side-effect-wise I'm doing OK, and the first couple of weeks I felt like I was improving. I'm just worried about having my symptoms return in such spectacular fashion. That said, this week is probably the most stressful week of the year for me thanks to work -- I landed in the hospital for the first time last year with severe stomach pains right around this time of year.

 

[Astra]

Hiya Jesse
I've had success with Entocort, but only from a kick start with Pred with a CRP of 261.
The Pred reduced my inflammation right down to CRP 23 and the Entocort maintained for 4 months, 9mg for 6 weeks, 6mg for 6, then 3mg for 6 weeks.
Cos my Crohns is in TI, the Budes always manages to blitz a flare, (just finished a round of em) and feel smashin!
When was the last time you had blood work done? Ask what your CRP is and take it from there, if it's high then a round of Pred might work and the Budes to maintain for a few months?
Hang on in there mucker!
xx

 

[tots]

I too, was kick started by a week of prednisone in the Hosp in Feb. I have been on Endocort since that time. I do not feel as if it has done the job so far. I am hoping to start Remicade
next week and hope that works.


Lauren

 

[Jennifer]

Entocort doesn't work as quickly as Prednisone but for me its a small price to pay compared to all the side effects you get from Pred.

I've been on it for 2 months now and haven't noticed much of an improvement yet I'm also on a higher dose of 6MP with still not much of an improvement. Don't really know what's wrong with me. May just be scar tissue that the meds simply can't help. I have used Entocort in the past though and did have success with it.

 

[sfmreb2]

I found the right combination for myself. I was taking 8x500 mg's of Pentasa a day. I dropped it to 3 a day with meals. With the 3 Entocort in the morning. It is working GREAT:ysmile:. I have always had a problem with taking Asprin. Since Pentasa's base is a form of Asprin I think I was getting to much of it. It has only been about 5 days, but now I can walk to the bathroom in the morning instead of running and hoping I make it. Ah, the wonders of a formed stool. :dance:

 

[Miss Underestimated]

I think Entocort is a modified form of pred. It is a synthetic and the molecule is larger so it stays in the digestive tract. It's usually used as a bridge to another long-term treatment. I took it for about a year, and it kept me from getting any worse while I decided whether or not to take Humira.