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MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 10/9/2009 1:57 PM (GMT -7)   
My daughter's GI Doc just prescribed Entecort for her. Diagnosed March '09, used prednisone and pentasa, got better, then flared again in September.  What side effects should I expect from the Entecort?  Thanks!
Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/9/2009 1:58 PM (GMT -7)   
    Oh and another question...is this usually a long term med?  He is starting her off at 3 capsules in the morning and he mentioned tapering her down.
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • Rider Fan
    Veteran Member


    Date Joined May 2008
    Total Posts : 1445
       Posted 10/9/2009 2:46 PM (GMT -7)   
    Shouldn't have any side effects as it's not systemic. I would take calcium, if not already doing so. This is a steroid, so not generally used long term but some do. I think the main concern is bone loss. Certainly a better alternative than prednisone if it works.
    33 y/o male. Dx'ed in 1999. No surgeries.

    Current meds: Humira 2/27/09. Proferrin iron pills.

    Tried SCD, didn't work, now avoiding gluten and dairy.


    Go Saskatchewan Roughriders!


    bella_sky
    Regular Member


    Date Joined Aug 2009
    Total Posts : 90
       Posted 10/9/2009 3:00 PM (GMT -7)   
    Entocort is a temporary med, it makes me hungry when I dont take it with the other meds. Though, I'm still 20lbs lighter and continuing to lose. I think its the med guilty for daily headaches too but cant be sure. Your daughter will feel relief soon hopefully, Entocort really helps getting things under control :) Its nice to see another caring mother in here, you must be wonderful. I'm kind of jealous lol, anyway I hope she realizes how lucky she is that you are there for her so much, it will make a big difference in getting better.
    dx w/CD finally in July 2009, currently taking pentasa, entocort, cipro, flagyl, probiotics, celexa, bentyl, biofeedback.
     
    "It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change" Charles Darwin


    PV
    Veteran Member


    Date Joined May 2006
    Total Posts : 1177
       Posted 10/9/2009 4:03 PM (GMT -7)   
    Entocort is also a steroid like prednisone, except that it is not as systemically absorbed as prednisone. So, it should have much fewer systemic side effects than prednisone. It usually has best effect in the small intestine (terminal ileum) and the ascending colon - so I'm guessing that's where your daughter's inflammation mostly is. It is definitely better than prednisone to take - you should notice far fewer side effects if any from the entocort. If you see any side effects at all, it'll be somewhat the same as prednisone - mood alteration, moon face, bone loss, blood sugar, etc, but to a much much lesser extent than with prednisone.

    I definitely recommend taking calcium, and also avoid grapefruit juice. In the entocort guidelines, they tell you to avoid grapefruit juice, because it makes entocort be more systemically absorbed, which you don't want. Other fruit juices don't seem to have the same effect.

    I hope your daughter gets to remission quickly and stays there a long time.

    PV
    Husband with Crohn's
    Diagnosed March 2003 Ulcerative Proctitis
    Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
    Canasa, Lialda, Remicade, VSL#3, Florastor
    In Remission since June 2008
    Stopped vancomycin for c-diff Jan 1 2009
    C-diff free, until Sep 2, 2009
    Fighting c-diff, I guess for life


    MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/9/2009 5:22 PM (GMT -7)   
    Thanks everyone. I'm feeling encouraged about the Entocort now.  Our other options were: another colonoscopy (just had one in March!) to see "what's going on" in there; or enteral nutrition with tube feeding for a while (NOPE! said we).  Those other two options seem very drastic. She's flaring right now, but still playing soccer, going to school (most days...), eating (albeit a bit less), and being a happy kid for the most part. 
     
    When I asked the doctor about a possible "liquid nutrition" diet for her to give her insides a chance to heal, he started yammering on about enteral nutrition and a feeding bag that we would have to tend to nightly (gasp!), etc.  I was shocked because I was thinking more of a dietary meal replacement shake (see absorbplus.com) that she could try for a while IF (and it's a big IF) she would drink it.
     
    So...we opted for the Entocort option because it was the easiest for a child. Gosh I sure hope it does the trick. She was fantastic on prednisone, except for the whole puffy face, eating the house down thing.
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • MoobyDoo
    Regular Member


    Date Joined Sep 2009
    Total Posts : 212
       Posted 10/9/2009 5:25 PM (GMT -7)   
    Can Entocort be opened and mixed into a splash of juice?  She's not good at swallowing pills!
    Posts refer to my 9 year old girl
  • Started with 30 mg Prednisone, tapered off over 3 months.  Currently taking:
  • Pentasa, 3 blue horse-sized capsules, 2 x daily
  • Forvia multivitamin/mineral for Crohnies
  • Coromega and Omega capsule; Calcium
  • VSL#3;  Custom Probiotics; Culturelle; Align

  • PV
    Veteran Member


    Date Joined May 2006
    Total Posts : 1177
       Posted 10/9/2009 5:39 PM (GMT -7)   
    They say Entocort should never be crushed, and should always be swallowed whole.
    ibdcrohns.about.com/cs/prescriptiondrugs/a/entocortfaq.htm

    So, I think you're going to have to be a little inventive about how you get it down the hatch. :-)

    PV
    Husband with Crohn's
    Diagnosed March 2003 Ulcerative Proctitis
    Diagnosed March 2008 Crohn's & C-diff, hospitalized 45 days
    Canasa, Lialda, Remicade, VSL#3, Florastor
    In Remission since June 2008
    Stopped vancomycin for c-diff Jan 1 2009
    C-diff free, until Sep 2, 2009
    Fighting c-diff, I guess for life


    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1884
       Posted 10/9/2009 6:15 PM (GMT -7)   

    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.


    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1884
       Posted 10/9/2009 6:31 PM (GMT -7)   

    No, it cannot be opened or crushed, and must not be chewed. It is designed to be released at the right time and in the right place.

    It should be taken all at once, in the morning, and at the same time every day.

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