Entocort Users, how you doin'?

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CrohnsDaddy
Regular Member


Date Joined Oct 2007
Total Posts : 235
   Posted 11/23/2009 11:06 AM (GMT -7)   
I had Entocort as part of my Crohn's cocktail for just over a year. During that time, I had so many changes and/or adjustments to my meds that it became quite confusing as to what was working and what wasn't.

The first Crohn's treatment I had was Lialda and Entocort. I was on that for several weeks with no noticeable change in symptoms. That's when the drug cocktail started changing.. added pred, Humira, etc. to the mix.

Anyway, to make a long story just semi-long, I am now trying to get *entirely* off of the prednisone, and would love to hear from people here that either are currently using Entocort, or have used it in the passed. How well did it work for you?

I wish I could remember her forum name, but there was a lady that used to post here that said her young daughter was able to keep her Crohn's completely in remission with just *one* capsule of Entocort per day. Wow, how sweet would *that* be?

Right now it looks like my cocktail is going to be Pentasa X4, Entocort X3, Azathioprine 100mg, and zero pred.
Just trying to be a "Regular Member".


Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


sickandlucky
Regular Member


Date Joined Oct 2009
Total Posts : 253
   Posted 11/23/2009 11:15 AM (GMT -7)   
I was on entocort for a while this year and I don't think it really did much either than make my face puffy because I kept getting the flu! But the first month I was on it was really good and I saw alot of improvement!
19 y/o female, diagnosed crohns december 2008
currently taking 500 mg pentasa 4x daily


AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/23/2009 3:32 PM (GMT -7)   
Hi CrohnsDaddy,

I've been taking Entocort and Pentasa since April 2006 and am slowly decreasing the dosages. I started at the same dosages you are now taking but have reduced the Entocort to 1 pill (3mg) per day and just last week reduced the Pentasa from 16 a day to 12 a day. I'm having a mild flare from the reduction but I seem to be improving already, so I should be able to stay at 4 less pills a day. yeah

I hope you do at least as well too.
AzJohnny


I feel a whole lot more the way I do now than I did a little while ago.
Crohn's Dx April 2006. Pentasa and Entocort EC


MoobyDoo
Regular Member


Date Joined Sep 2009
Total Posts : 212
   Posted 11/23/2009 5:00 PM (GMT -7)   
My nine year old, 63 lb. daughter has been taking Entecort since September. 3 pills to swallow per day, and will be tapering down to 2, then 1 eventually, then off.  So far, it does seem to help her have more normal looking bowel movements, but she is still having a sensitive tummy and it seems lots of different foods still bother her.  Still some weight loss. Very frustrating for us cuz we haven't seem to have found her perfect "cocktail" yet. (She's also on 3 pentasa horse pills daily...lots of meds for such a tiny girl.)

  • snowbomb63
    Regular Member


    Date Joined May 2004
    Total Posts : 61
       Posted 11/23/2009 7:51 PM (GMT -7)   
    Hi, I have been on the "maintenance" dose of entocort for seven years now, two pills a day. It is probably the best med for me. My doctor at Johns Hopkins said it was fairly safe long term considering some of the options out there. It has kept the last seven years down to only two flares for me, so I've been able to stay off of prednisone except for those two times. Before that, it was a constant up and down. I never have had any side effects from the drug, I go for bone density testing every year and have a Reclast infusion for prevention once a year. Hope this helps.
    Good luck!
    Marla
    Crohn's, Enteropathic Arthritis, Enthesitis, Daily Migraine

    Prednisone, 6MP, Entocort, Pentasa, Topamax, Effexor, Vicodin,

    Sed rate sits in the 70's and can't seem to get it down


    CrohnsDaddy
    Regular Member


    Date Joined Oct 2007
    Total Posts : 235
       Posted 11/24/2009 4:20 AM (GMT -7)   
    Great information everyone, thank you. Looks like I'll give it another shot.
    Just trying to be a "Regular Member".


    Entocort 9 mg/day, Prednisone 20 mg/day, started Humira 1/22/08, started 100 mg of Azasan (Imuran) 2/20/08. Increased Azasan to 150 mg 10/15/08. Discontinued Humira 11/03/08 after extreme fatigue and moderate muscle aches. Started Cimzia 12/4/08. Down to 5 mg/day of Pred now, and will continue to taper until completely off as long as the other meds keep me off the porcelain.



    I'm convinced that Prednisone is the root of all evil, and primarily responsible for global warming.


    momoftwo
    New Member


    Date Joined Jan 2003
    Total Posts : 14
       Posted 11/24/2009 7:03 AM (GMT -7)   
    Hi... I've been taking 9 mg of entocort, with Lialda (4 caps per day) for about one and a half years now.  It has worked rather well for me.  It's not perfect... but beats the heck out of where I was.  I can function pretty normally, am able to leave the house without "fear", old down a part-time job, etc.  I think it has been an answer to prayer for me.  I was taking pred before, but my GI made me wean off of it before starting the enotocort.  Good Luck!

    Nanners
    Elite Member


    Date Joined Apr 2005
    Total Posts : 14995
       Posted 11/24/2009 7:25 AM (GMT -7)   
    I think it was nymom or njmom who had the daughter who is maintained on the one entocort a day. I could be wrong though:)
    Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
    Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
    It's scary when you start making the same noises As your coffee maker.
    *Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

    njmom
    Veteran Member


    Date Joined Apr 2006
    Total Posts : 1884
       Posted 11/24/2009 5:53 PM (GMT -7)   
    Hi CrohnsDaddy,
     
    My daughter did well, but it wasn't only on Entocort. She was and is on a very strict diet -- we don't think the one pill of Entocort, by itself, could have kept her out of a flare for years. However, a colonscopy earlier this year revealed that, though her stricture had disappeared and she has zero symptoms, there are still a couple of spots of active inflammation -- and her ability to absorb B12 has been steadily declining. (Gets B12 shots now.)
     
    She recently used LDN to taper of Entocort, and next week will have labs done to see whether sed rate or CRP are rising in the last four weeks since she has been completely off Entocort. If yes, we look for another med. If not, before shouting halleluhah we have a colonoscopy done to confirm no inflammation. 

    HM
    Regular Member


    Date Joined Sep 2008
    Total Posts : 211
       Posted 11/24/2009 6:42 PM (GMT -7)   
    I have been on endocort since being dxed--with the acception of a month. I have gained 50 lbs since starting on it. My dr said it was because I could eat more(not my gi), yet when I went off of it 6 lbs came off. My dr corrected himself, lol it does seem to make a difference for me and my gi added another 3mg after my horrid flare.

    37/f   proud single mom of 2

    Diagnosed with GERD/Acid Reflex 2002

    Diagnosed with IBS 2007

    Diagnosed with Arthritis 2007

    Diagnosed with UC, then Crohn’s 2007

    Diagnosed with Generalized Anxiety Disorder 2008

     

    Starting on REMICADE probably within the next mo.

    Current medications: Asacol 2 tablets 3X daily, Imuran 50 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron and Vit. C 500mg daily


    Valerie3
    Veteran Member


    Date Joined Feb 2009
    Total Posts : 529
       Posted 11/24/2009 8:15 PM (GMT -7)   
    I've been on Entocort since March (9 mg/day), I have pretty normal BMs and the pain has decreased (my CRP has also gone down dramatically), but I still have a bit of nausea and I still get some pain. I may have to switch to something stronger to get me into remission unfortunately, my doctor said that I'm really at the limit of what Entocort can treat. I'm also having my gallbladder tested, though, it's possible that my gallbladder is causing the majority of my symptoms. Overall though, I have been very happy with Entocort - no side effects and I have improved greatly over what I was before I started taking it.

    imissicecream
    Regular Member


    Date Joined Oct 2009
    Total Posts : 157
       Posted 11/24/2009 11:06 PM (GMT -7)   
    I've been on entocort for about a year now, and I've had quite a few dermatological side-effects such as stretch marks around my stomach, increased zits (but this may just be stress), and dark freckle-type spots on my chest and neck, bruising easily...not to mention weight gain....they're things I'm willing to deal with, though, because it has made me feel much better.
    We're actually on the same cocktail of medications. =D. We can be pill buddies, lol.
    I've been on the full dosage of 3 pills per day for the whole year. Every time my doc tells me to taper, I end up flaring within two weeks.
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