At the full dosage of 9 mg, my daughter did experience some constipation. Also, at 6 mg and above, it suppresses the immune systems, so she was more susceptible to viral and bacterial infections as well as viral turning into bacterial infections -requiring Zithromax to clear up. Also, over time, she started having higher blood sugar due to the 6 mg daily (she had been taking it nearly a year at the time). Also, acne. Clinical trials show that side effects increase over time - if taken for years, bone loss, etc. As a glucocorticosteroid, Entocort also interferes with vitamin D absorption and some minerals, etc. BUT the Entocort DID make her right lower quadrant pain go away in two weeks. And the one time she tried to go off it, she was immediately hospitalized.
We found that her personal diet combined with the 3 mg of Entocort eliminated her stricture (which looked so bad in 2006 that the a doc suggested surgery - but has just disappeared) and has kept her stable for more than two years.
BUT a recent colonoscopy showed inflammation so the Entocort has not stopped Crohn's dead in its tracks and there is no evidence that Entocort, at any dose, causes mucosal healing. The most obvious sign of decline despite the stricture is that her ability to absorb B12 had declined substantially -- I hope this is reversible once we find something that will stop Crohn's dead in its tracks, eliminating the slow festering we saw on the colonoscopy.
So for three years she has been on Entocort, nonstop. We happen to subscribe to the theory that Crohn's is not due to an overactive immune system, and also fear the side effects of Imuran - bone marrow suppression, etc. We looked at tons of alternative treatments and settled on LDN as the safest way (at least in terms of side effects) to try to taper off Entocort.
If your daughter responds well to Entocort and achieves remission within the up to 8 weeks time frame at 9 mg per day, then she should probably continue to take 6mg a day for another 12 weeks AFTER achieving remission - Entocort is FDA approved for this maintenance period. Clinical trials don't show any added benefit of taking the med longer than 12 weeks AFTER achieving remission, but of course everybody is different.
Entocort is not an acceptable long term maintenance medication, due to the inevitable side effects and slow festering. But Entocort and diet bought my daughter and my family time to consider all options. In my daughter's case that means LDN. It looks like her taper off that one last pill of Entocort is going well, so far. If the LDN 1) can at least provide a slight vacation from Entocort, wonderful! If it can 2) achieve mucosal healing confirmed by a colonoscopy, then she will stay on it. Right now, she's still in step 1.