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09-14-2013, 03:22 PM   #1
Jison0612
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Entocort

So I've been on entocort for 4 weeks now and can tell a difference on my back side I'm not bleeding when I bm and don't have as much pain. The only thing is I'm still having abdominal pain with bloating and lots of fatige? Is it normal to help one aspect of my symptoms but not the other?
09-14-2013, 03:31 PM   #2
Clash
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Have you had your iron levels checked? That can cause severe fatigue as well as other vitamin deficiencies due to malabsorption. Also it tends to take entocort a little longer than pred to get every thin under control.
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C age 19
dx March 2012 CD

CURRENT MEDS: MTX injections, Stelara


Dx May 2014: JSpA
8/2014 ileocecectomy
9/2017 G tube

PAST MEDS: remicade, oral mtx, humira
09-14-2013, 03:32 PM   #3
alex_chris
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Entocort does help to relieve inflammation, but unfortunately it is not magic. It takes quite some time to get into remission. Are there any long term meds (biologics or immunosuppressives) you are on? Entocort should only be taking in the short term.
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Crohn's diagnosed in 1999
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Vitamin therapy with D3, B6, B12, magnesium, zinc, folic acid for years
Iron therapy with Tardyferron 80mgx2 and Loesferron 80mg for years
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09-14-2013, 03:42 PM   #4
Jison0612
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No just entocort right now but I'm sure a maintenance drug well soon be on its way
09-14-2013, 03:43 PM   #5
Jison0612
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And yes I'm on a d3 and magnissum and zinc vitamin daily
09-14-2013, 03:46 PM   #6
Jison0612
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Sorry for the repeat post!! But what is the usual next drug after entocort I know every person is difference but I'm sure they have a basic go to set of meds to try so I was just wondering whats next?
09-14-2013, 04:04 PM   #7
Clash
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It depends on if your GI follows bottom up approach or top down approach.

The meds are 5ASA's(pentasa, asacol etc), immunosuppressants(6MP, Imuran, MTX) and biologics(remicade, Humira, cimzia). With bottom up you start at the lower level for example 5ASA and move up if or when each med fails. Top down you start at the top like Remicade. The thing with maintenance meds is they can take quite some time to get at therapeutic levels so are generally started with intial pred/entocort so they can build up as you taper off the steroid.
09-14-2013, 04:06 PM   #8
Jison0612
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Does ur son have bloating and abdominal pain with his constipation?
09-14-2013, 04:13 PM   #9
Clash
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When he is flaring, he would have bloating after eating and at time abdominal pain but that seemed to be further in from when symptoms started. His started with the feeling that when he swallowed he was having to swallow past something. Also that he could feel the food as it went down. Later the bloating and stomach pain started.
09-14-2013, 05:03 PM   #10
Jison0612
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My pains started upper abdoman so bad I had to go to the er then they stubbed now I feel so bloated and backed up I feel like I'm gonna pop!! Idk if its from inflamation or gas or maybe a combination of both? It all started with bad acid reflux then awful cramps now bloating and constipation I hope this is the end of this flare its been all summer long!!
09-14-2013, 05:27 PM   #11
Clash
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You could have gastritis that is common with CD and may need something stronger than Prilosec. Might want to run all the new symptoms by your doc, but it can take awhile to get a flare under control at times. Hugs and Support
09-14-2013, 05:53 PM   #12
Jison0612
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Thank u and I'm sure I got acid reflux it showed up on the upper gi series he pointed it out to me
09-14-2013, 05:58 PM   #13
Clash
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Then you really may need something stronger than just prilosec. I thin my son was on medium and then nexium and zantac 150 at one point.
09-14-2013, 06:11 PM   #14
Jison0612
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I'm hoping once my flare gets under control then so well my acid reflux well just have to wait and see the dr may suggest that Monday after he looks at my upper gi series. I know the prilosec has helped out a lot!!!! I went from having chest pains, trouble breathing, and burning in my chest to a lil back wash with no heat!! Maybe the inflamation and has is pushing up causing my acid reflux? Who knows ill just have to wait and see
09-14-2013, 08:45 PM   #15
Justanothercp
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I've read a lot of people say "Entocort is a short term med", that makes me a little nervous because I've been on it for years with no plans of going off. I like/trust my GI, I think his thoughts are its been so hard to get me stable, he doesn't want to mess with anything and have me land in hospital for another resection.
Any thoughts??
09-14-2013, 08:52 PM   #16
Jison0612
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Im only 4 weeks into my first run with entocort I've also heard its a short term drug but if it starts working for me I hope they would keep me in it for a while. And how long did it take for u to start feeling relief when u started taking entocort? I can take on my back side that things have healed up but my guts still a miss bloating, no appitite, I'm sure inflamation, etc. just wondering if I may be giving up on this drug to soon?
09-14-2013, 08:52 PM   #17
Clash
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I'm on my mobile so really can't effectively post links, justanothercp, but the "short term" advice is probably coming from the dosing guide on the entocourt site. I think it states up to 3 months and even though it is not systemic it is still a corticosteroid. I do believe there are members who have been on it long term, though.

Edit: also I'm going from memory and goodness knows that isn't infallible so I would research it ensure what I stated is right.
09-14-2013, 09:04 PM   #18
Justanothercp
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Jison: I did start feeling better, but if memory serves, I started Entocort and Remicade around he same time, trying to get me off prednisone.

Clash: thank you for the input. I've had a dexa scan for osteoporosis, but that has been at least 5 years. I'll ask for another. And my blood work has been fine lately. Do you know what other signs would indicate I might have been on it too long?
09-14-2013, 09:10 PM   #19
Clash
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Honestly, I'm not sure if or what the signs would be indicating you had been on it too long. Like I said, I don't think your situation is rare, I do believe there are several patients on here that have been on entocort long term. But I have seen threads discussing the fact that Tue GI is trying to get the patient off of them as well. Hopefully, someone more experienced with the facts of entocort will be along shortly for both of you.
09-14-2013, 09:12 PM   #20
Clash
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When I get to my laptop I'll post some studies/threads/etc on entocort in this thread for you and jison0612
09-14-2013, 09:14 PM   #21
Justanothercp
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That would be great!! (Funny how knowledge is power, but can also scare ya to death)
09-14-2013, 09:41 PM   #22
Clash
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Okay from the Asta-zenaca website it states this under Indications and Usage:

ENTOCORT EC is a glucocorticosteroid indicated for:
Treatment of mild to moderate active Crohn's disease involving the ileum and/or the ascending colon(1.1)

Maintenance of clinical remission of mild to moderate Crohn's disease
involving the ileum and/or ascending colon for up to 3 months.(1.2)
source

If you click on my source link it will take you to the PDF, it also states that since it is a glucocorticosteroid it also states the general warnings for these types of steroids should be followed. And that the 3 months maintenance is once you get down to 3mg I believe so make sure you read that whole section of the PDF so you get the complete picture. The indications are also due to the fact that is as long as it showed continued efficacy in studies which can be different in practice.

Here are the results in a study on bone density:

Neither the corticosteroid-free nor the corticosteroid-dependent patients treated with budesonide differed significantly in bone mineral density from those receiving prednisolone. However, corticosteroid-naive patients receiving budesonide had smaller reductions in bone mineral density than those on prednisolone (mean, −1.04% vs −3.84%; P = .0084). Treatment-emergent corticosteroid side effects were less frequent with budesonide. Efficacy was similar in both groups. Conclusions: Treatment with budesonide is associated with better preserved bone mass compared with prednisolone in only the corticosteroid-naive patients with active ileocecal Crohn’s disease. In both the corticosteroid-free and corticosteroid-dependent groups, budesonide and prednisolone were equally effective for up to 2 years, but budesonide caused fewer corticosteroid side effects.
source

You can use PubMed to read through studies on entocort but any information you glean I would suggest you go over with your GI. Although, any of us can read the studies your GI has seen these meds in practice and that plays a role in his process of prescribing them. Good luck.
09-14-2013, 10:00 PM   #23
Justanothercp
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Thank you for the information and links. I'll put them to good use.
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