Crohn's Disease Forum » Treatment » Prednisone/Entocort » Need feedback on Encort

01-22-2014, 02:47 AM   #1
Join Date: Dec 2013
Location: Olympia, Washington
Need feedback on Encort

I was diagnosed with Crohn's in 2012, the only medication I have been on since my diagnosis is Pentasa. Until recently just the Pentasa seemed to be working just fine. However, over Christmas I experienced my first really big nasty flare and I just haven't felt the same since. And in the last few weeks I've been dealing with this sharp constant ache in my lower right abdomen and back, along with almost constant nausea and really irregular BMs. I saw my GI doc today and she said she wants me to try a couple weeks on Encort.

I guess I just need some feedback on it from those of you who've used it. As I understand it, it is basically a steroid that like Pentasa doesn't completely dissolve until it gets down in to you gut. But does it have the same side effects as regular steroids? I've already experienced some weight gain from another medication I take (Gabapentin for nerve pain after a hand surgery) and so the last thing I need is more weight gain. Lastly, have you found good results with Encort?

Thanks to all who reply.
01-22-2014, 03:14 AM   #2
Jennifer's Avatar
Entocort helps with inflammation in the ileum and the ascending colon. It has fewer side effects than Prednisone and personally I've only noticed side effects with long term use (took 6 months of 9mg for me to notice any mild weight gain from water retention etc). It's been known to take longer than Prednisone to start working (some have mentioned up to 3 weeks) so it's possible that using it for a couple weeks might not do much. Usually when we see people on Entocort it's taken for about 3 months.

It is a steroid though and will only help to reduce current inflammation in the ileum and ascending colon but does not prevent it. Talk to your doctor about taking something stronger than Pentasa as Mesalamine medications are topical (only work on the surface) and aren't the best for Crohn's disease because it causes inflammation deeper in the intestinal lining.

Drung info:

Hope the Entocort helps. Keep us posted.

Edit: I'm assuming you meant Entocort and not Encort which is a topical steroid cream like Cortizone-10.
Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 75mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel (endometriosis), Tylenol 3 (Osteoarthritis), Zantac 150mg 2/day (acid reflux), Klonopin 1mg (Panic Disorder), Imitrex 25mg (migraines), Zofran 8mg (nausea)
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 19 years and counting.
01-22-2014, 02:55 PM   #3
Join Date: Dec 2013
Location: Olympia, Washington
Thank you for your response, Jennifer!

When my Crohn's was first diagnosed my GI doc called it mild to moderate. I thought that the Pentasa along with some good probiotics and dietary changes would be all I needed. And that seemed to be working for a food year at least. But like I said, I had my first big nasty flare during Christmas and things just have not been the same since. I don't know if this means my Crohn's is getting worse despite all I was doing to manage it. All I do know is Crohn's can be a very unforgiving disease, and even though you might feel well that can change in a flash. That is something I am sure most of you have come to terms with already, but I'm still trying to.

I don't know if the Encort will help, but obviously I need to readjust my Crohn's care routine. Mostly I just wondered if it being a steroid meant it would have the same side effects. So again, thank you for your reply!
02-03-2014, 06:27 PM   #4
Join Date: Dec 2013
This a link to my experience with Entocort I forgot to add about the extra hair I grew on my face and back
02-03-2014, 06:28 PM   #5
Join Date: Dec 2013
oh, and i wrote this too
02-06-2014, 04:27 PM   #6
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Cat-a-Tonic's Avatar
Join Date: May 2010
Location: Madison, Wisconsin

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When I was first on Entocort (about 3 years ago), I was on it for 7 months total. It took that long for it to get me fully in remission and for me to taper off of it without flaring. I did gain some weight during that time, about 25 lbs. But I had previously lost 20 lbs due to being so ill and not being able to absorb enough calories, so the weight gain in my case was a good thing. It meant my body was healing enough so that I could properly absorb and digest food again, and it got me from being underweight back up to a normal healthy weight - it was pretty much just me regaining the weight I had lost. Besides the weight gain, the only side effect I got from Entocort was headaches. My GI put me on Amitriptyline and that stopped the headaches in their tracks. Other than that, no issues at all with Entocort. It got me into remission and I stayed there for about 2 years before I started mildly flaring again. That nice long remission was wonderful!

I'm now back on Entocort again to try to get this mild flare back under control, and I'm currently at a healthy weight already, so this time around I will be watching what I eat a little more closely as I want to maintain, not gain. I exercise a lot so I'm not overly concerned though. In my previous experience, Entocort is pretty mild - especially compared to something like prednisone. Pred made me HUNGRY and gave me crazy superhuman levels of energy and made me feel fantastic. Entocort makes me maybe a little more hungry and gives me normal "healthy person" levels of energy and makes me feel good. Basically, pred turns me into a crazy character while Entocort just makes me feel human again.

Crohn's Disease Forum » Treatment » Prednisone/Entocort » Need feedback on Encort
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