entocort question

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trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 2/29/2008 6:06 PM (GMT -7)   
Is entocort a steroid that it's okay to stay on long term? Prednisone is pretty much the only thing my crohn's has responded to, but I know I can't be on it forever.  And I've been off and on it so many times in the past 9 years that I know it isn't good for my bones and all.  Is entocort better as far as all that goes?
~Nikki


straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 2/29/2008 6:49 PM (GMT -7)   
Nikki yes, I have been on Entocort almost 2 yrs with no usual steroid problems. Remember 95% goes straight into the small bowel. As my gi put it to me, its a steroid to take that does not have all the bad crap that comes with steroid use. Hope this helps. Susie


trickynikki
Regular Member


Date Joined Jul 2003
Total Posts : 481
   Posted 2/29/2008 7:00 PM (GMT -7)   
That helps a lot, Susie, thanks :) I'm definitely going to bring up entocort to my doctor. I recently tried Remicade, and found out I was allergic to it. My doctor wants me to try humira, but I'm hesitant. I'd definitely rather try entocort, especially since I've had such good results with prednisone.
~Nikki


straydog
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Date Joined Feb 2003
Total Posts : 13451
   Posted 2/29/2008 7:06 PM (GMT -7)   
Nikki I am on the Entocort & Imuran. I can honsetly say I better right now than when I was on Remicade for 3 1/2 yrs. It helped me but it lost its effectiveness. I now have the joint pain to contend with that the Remicade took care. Susie

If and when the dr ever decides to take you off Entocort you will have to be weaned off. I have had a couple of instances of not getting my meds for 3 days, put me in a tailspin.


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 2/29/2008 8:30 PM (GMT -7)   
If it works for you, then Entocort is a great alternative. Most of it is released in the terminal ileum, right where it is needed. And so not as much of it gets to the rest of your body, where you don't need or want it...and which causes worse side effects. Pred, on the other hand, affects the entire body.
 
My daughter has been on Entocort for two years...on only one pill since last May and still is in remission. She flared only when she tried to go off it, so now she will stay on it an indefinite time. Long term use does seem to make her blood sugar go up, especially in winter, but at least the blood sugar is not above normal. Pred's effect on her blood sugar caused it to rise above normal almost right away.

Lady G
Regular Member


Date Joined Sep 2006
Total Posts : 321
   Posted 2/29/2008 9:06 PM (GMT -7)   
my doctors refused to keep me on Entocort saying its only really good for short term treatments and not long term and not good for maintenance....which seems to be different then others are saying..its all up to your doctor and his opinion of the pills really. talk to them of course.
26 year old, married. Diagnosed with Crohns at 17, suspected of having for at least a year or so before that.  Alot of Crohns in my family history.  No surgeries yet. Imuran treatment with Prednisone tapering at moment.  Possible Fistula.


brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 3/1/2008 12:39 AM (GMT -7)   
My doctor said the same thing as Lady G. I was only on it for 9 months and my bone density scan came back showing that I have some osteopenia in my hip. Keep in mind that I'm only 23 and I definitely do drink milk and have calcium. Entocort has been the only thing that has worked for me. But my doctor refuses for it to be my long term treatment. So for now I have started on 6-MP. Yes it seems scary, but I'd rather deal with something that might not cause me those side effects than stay on something that is already causing bone density loss.

I guess it depends on the doctor though. So definitely talk to yours.

lady1012
Regular Member


Date Joined Nov 2006
Total Posts : 304
   Posted 3/1/2008 7:18 AM (GMT -7)   
I have been on 9mg on entocort for 3 months doc hasn't started a taper yet, i see him next week.........i love it it has helped me alot.......i do notice if i don't take in with breakfast in the morning( i forget ) and i end up taking it at noon or later........ i realize then how much help it does give me.......i would talk to you doctor about it the only side effect i ever had was a mild headache when i first started it.......after that nothing.....its definatly helped me..
I'm cute. Let's put me in charge.(happy bunny)
 
 
 anemia, b12 deficiancy, and malobsorption, moderate joint pain,severe weight loss, gastritis
 omega 3, digestive enzyme, calcium, vit d, flax oil, aloe vera juice, 9mg of entecort, 100mg Imuran
 diagnosed with a CT scan september of 2007.


karendee
Veteran Member


Date Joined Mar 2007
Total Posts : 1642
   Posted 3/1/2008 7:51 AM (GMT -7)   

I have been on Entocort for almost a year now. I do notice I gain more weight than on prednisone but I am one of those people that meds seem to have opposite effects on me :-)

I did try to take myself off it once even though my dr did not want me to and I flared big time and then it took me a while to stop flaring...

I would suggest you take it for a while... I know it took a while longer for it to work for me but it has worked well.

Karen


 ...

Karen (Karendee)

Diagnosed w/ Crohn’s Disease  March 2007 On 150mg Azathioprine (generic Imuran), Pentasa, & Entocort (take zofran for nausea now)

Diagnosed w/  Fibromyalgia May 2007 also on Soma

Also have Arthritis, and feel like I am falling apart sometimes...


tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 4/21/2009 10:02 AM (GMT -7)   
I have been on Entecort for 2 months. (since I was dxed) It was great for about 3 weeks- no symptoms at all- All of a sudden my syptoms returned full force. I am now on Pentasa and Entecort and still have symptoms =( At first my doc said it was a short term treatment only....now he wants me to stay on it. I am a little confused by that. He also said it was unlikely the Entecort lost it's effectivness. How ever my tummy begs to differ. I see him again in 2 weeks...we shal see

23/ Female DXed Crohn's 1/09
Many diet restictions
Entecort, Pentasa, Zantac, Fish Oil
Still confused and sometimes angry/frustrated
However I am learning to laugh at all this more often


jsk218
Regular Member


Date Joined Jan 2009
Total Posts : 29
   Posted 4/21/2009 11:29 AM (GMT -7)   
My doctor also wanted me off of Entocort ASAP. I was on it for about 2 years without any major side effects. I was reluctant to taper off of it, but so far, I've had good success with Humira (about 3 months).

Good luck!
Diagnosed with Crohn’s Disease in Jan 2007, though sick since mid 90’s. Currently on Humira and Protonix. Have had success with Entocort and Cipro; negative experience with Methotrexate.


goldy3
Regular Member


Date Joined Feb 2009
Total Posts : 139
   Posted 4/21/2009 2:15 PM (GMT -7)   
I have been on entocort since december and have had no side effects that I know of..I am now down to 3mg and weaning off as I am 1 month into humira and it has allowed me to get off cipro, wean down on entocort and wean off of xifaxin
42 year old woman diagnosed with UC 1991, Jpouch surgery 1992, Crohn's diagnosis 2009
Current meds: 800mg xifaxin, 6mg entocort, Humira (started 3/23/09), synthroid, aciphex
 

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