Impatient-- entocort

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Regular Member

Date Joined Feb 2010
Total Posts : 403
   Posted 3/20/2010 11:42 AM (GMT -6)   
I have some its been a week with the entocort...if anything I have seen my diarrhea worsen..I am nervous over a number of things.. for one as you remember, the dr had told me if this didn't work than I don't have crohn's. I am not sure I understand that statement because he looked at the capsule endoscopy and saw what he believed to be crohn's...from reading the forums I seem to understand that the first medicine may not work..The one thing I have noticed is my joint pain has subsided.. but my stomach pain, diarrhea and lack of appetite are still in full force. I am still going over 6x a day, sometimes as much as 10.. considering this has been since Christmas.. it is really worrying me..
Two, I can't get a hold of any doctor which makes me happy about my second opinion on tuesday.. I find that clinic so frustrating.. you have to go through the nurse coordinator but its jumping hoops to get to her.. if she is busy, than you don't get a call back.. you can't get to the dr..and because mine is on vacation, they keep telling me to just wait until she gets back..this is not an emergency.. Do you find it odd that they put me on a medication, no followup, no instructions, just take it and call back in two weeks and let us know if it worked?
Ugg.. frustrated to say the least.

thank you !!
40 to three wonderful kids, and wife to an amazing , supportive husband of 18 years..

Diagnosed with gluten intolerance April 2009

Diagnosed with Crohn's March 2010- just started Entocort

Have had myriad of health problems attributed to many different things over the past ten years. Our family has a history of Crohn's, Ulcerative Colitis and Bowel Cancer.

Elite Member

Date Joined Apr 2005
Total Posts : 14995
   Posted 3/20/2010 11:48 AM (GMT -6)   
Entocort has always taken me longer to kick in than Pred. I would give it the two weeks and if not feeling better let them know. I disagree that it must not be Crohns becuz the Entocort didn't work. Not all meds work for all of us. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Veteran Member

Date Joined Jul 2006
Total Posts : 6927
   Posted 3/20/2010 11:50 AM (GMT -6)   
Yeah most crohns meds take longer (I would even say a month) to reach a therapudic level in your body.
I am confused by the statement that if it doesn't work then you do not have crohns. That is bs, steriods do not work for everyone.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 3/20/2010 12:15 PM (GMT -6)   
When I was first diagnosed, almost 22 years ago, the range of medication available was much more limited. I was originally put on Asulfasalizine. I didn't get better, I got worse. It turned out I was allergic to sulfa drugs. Then I was put on Flagyl and Cipro, they helped, but not enough. I ended up in the hospital on IV steroids and finally got things under control after a week so that I could go home. But at no point, did my doctors say, if this ONE medication doesn't work, then you don't have Crohn's. And I had only been diagnosed by symptoms and family history! Its complete BS for your doctor to say that.

I agree that it could take a few weeks to see results from Entocort, it takes longer to work than prednisone. So don't give up on it, and you have seen some results with your joints. I do hope your second opinion turns out well cause it sounds like this group is not really the right fit for you.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Veteran Member

Date Joined Sep 2006
Total Posts : 845
   Posted 3/21/2010 3:27 AM (GMT -6)   
Entocort was never effective for me and I am a 100% diagnosis. It is really easy to get restless and inpatient when you are sick and not seeing results but these things take time to get better. Please remember that this disease is one that is different for everyone and you may have to try a few different medications at different doses to find what works for you. You need to continue calling your doctor's office and inform them that you are not seeing any positive results. They may need to switch to prednisone that is a stronger steroid that really affects the whole body but does have worse side effects. It may end up being the godsend medication that you are hoping for to help calm your current flare enough to get you on a maintenance medication. Continue to be positive and patient and know that this is a marathon fight and not a sprint.
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