hi...I'm new here..entocort worries

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Regular Member

Date Joined Nov 2007
Total Posts : 68
   Posted 12/4/2007 11:17 PM (GMT -6)   
 hi....been reading these post for days, thought it was time to join...found out I had crohns since 2005. Been anemic since then too, I'm on Pentasa but doctor wants to put me on entocort, nervous about starting this.. had an allergic reaction to cortisone shot in my knee years ago, doctor said it should be okay.I take care of my mom who is confined to bed due to stokes. I'm worried about the side effects of the entocort.anyone can tell me what to expect.....

Regular Member

Date Joined Sep 2007
Total Posts : 98
   Posted 12/4/2007 11:21 PM (GMT -6)   
about a week after I started entocort I started having awful leg,ankle, and foot pain. Also swelling in those areas. It was painful to even get out of bed and walk to the bathroom. It eventually went away but it was AWFUL while it was happening. It also makes me have to pee more. But that's about it. Overall the side effects were well worth the relief that the drug provided for me.

Regular Member

Date Joined Dec 2007
Total Posts : 73
   Posted 12/4/2007 11:23 PM (GMT -6)   
i was on entocort for 6 weeks one of the first meds i was on. 9mg 2 weeks then 6 then 3. Overall it was good felt like superwoman had tons of energy and could do anything for hours.downside didn't sleep much when i did i got leg cramps which i later found out is a side effect. only other thing was a puffy face. Havent had much experience but thats my input. i am sure there are others on here to tho that will fill in any gaps.:)

Regular Member

Date Joined Nov 2007
Total Posts : 68
   Posted 12/4/2007 11:32 PM (GMT -6)   
thanks....not looking foward to leg cramps, but I would love to have some more energy.

Regular Member

Date Joined Sep 2007
Total Posts : 182
   Posted 12/5/2007 12:37 AM (GMT -6)   

Honestly, I have been on ENTOCORT about 5 times since I have had Crohn's (not anymore or recently because I am on HUMIRA) and I never had any side effects. If anything, I had a little bit of a moon face but NOTHING compared to what happens to me when I am on Prednisone. I would give it a Shot! Just take a lot of calcium and keep track of side effects, etc. Entocort never worked for my Crohn's unfortunately BUT it does for many people. The effects are so much less than the Prednisone. Honestly, I think a lot of the horrible pains that we get (I get them everyday no matter what I am or am not on) are just our Crohn's. Not that that makes it better!

Let me know if you need anything else!

I would go for it!

~ Brittany

Veteran Member

Date Joined Apr 2006
Total Posts : 1884
   Posted 12/5/2007 7:47 PM (GMT -6)   
Go for it!! My daughter has been on Entocort for more than a year...since May has maintained full remission (no symptoms) on just one pill a day.

When she was on the full dose of Entocort, the only side effect was slight constipation. Subsequently, after being on 9 mg Entocort for 8 weeks and 6 mg for 4-5 months, her blood sugar started to rise to the highest end of the normal range...however, when she tapered down to just one pill, the blood sugar returned to the 80s, which is good.
Daughter (20) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress and needing more fiber but landed in hospital in 3/06 with cramps, vomiting, stricture. Now in remission with Entocort 3 mg (one pill), SCD multivitamin, yogurt, vit D3 1800IU, 900+ mg calcium, 50 mg B complex vit, 25 mg iron. No longer on SCD diet.   

ski bum
Regular Member

Date Joined Jan 2007
Total Posts : 451
   Posted 12/5/2007 9:46 PM (GMT -6)   
I've been on Entocort on and off several times over the last two years. I've always felt best when I'm on Entocort. The only side effect I get is a mild increase in blood pressure. I would definitely try it.
CD dx'd Aug 05. Initially on Pentasa, then Imuran 125 mg. Started Humira (very reluctantly) on 10/24/07. Currently on Humira, Imuran and Entorcort. Hope to dc Imuran and Entorcort within one month of starting Humira.

Regular Member

Date Joined Oct 2007
Total Posts : 82
   Posted 12/6/2007 9:58 AM (GMT -6)   

I've been on Entorcort 3 times over the past seven years and have never noticed any side affects.  I think prednisone worked much better for me in terms of stopping a flare quickly, but the side affects are awful.  I'd rather take Entorcort for 3-6 months and get over the flare slower than deal with the prednisone side affects.  

As Crohns drugs go, I consider Entorcort to be one step above the 5-ASA drugs, which are also well tolerated and have few, if any, long term side affects.  It's way safer than the 'harder' drugs, like Remicade, Humira, Imuran, 6-mp, etc....

Everyone is different, so none of us really knows how a new drug will affect us until we try it.   I hope it works for you.


DX: mild to moderate Crohn's for 34 years
Additional benefits: chronic anemia, B12 deficient, peripheral neuropathy, facial mylagsia, joint pain, underactive thyriod
Current meds: Colozal, Nexium, Entocort, Flagyl, steriod cream, monthly B12 injections, Neurontin, Synthroid, Effexor ER, pain meds as needed

New Member

Date Joined Dec 2007
Total Posts : 3
   Posted 12/6/2007 10:01 AM (GMT -6)   
I feel great on Entocort. But that is me. I'm allergic to every other drug. I have found out that i also have Graves and cataracts from being on Entocort for so long. But i feel i can manage them and have surgury on my eyes and be done with it. I tried going off the entocort after i found out about the cataracts and started going into a flare. I put up with that for about a month and went back on entocort. But everybody is different. My sister has CD also and can not take it.

Veteran Member

Date Joined Mar 2007
Total Posts : 1642
   Posted 12/6/2007 4:02 PM (GMT -6)   
I have been on Entocort since  may. it took a while to work for me. I started on predisone and my Doc switched me to entocort instead.
good luck!


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...

New Member

Date Joined Nov 2007
Total Posts : 6
   Posted 12/6/2007 9:17 PM (GMT -6)   

Wow, this is the thread I needed today.  I just got done having a huge series of tests -- blood work, stool tests, abdominal CAT scan -- to check on flare up issues.  My doctor just sent me a letter with a prescription for Enticort, and this thread helped me feel better about taking it.  I'm currently on Pentasa, Flagyl(just for 10 days) for the mild infection and now Enticort.

I really appreciate that I can come here and find people who have experienced what I'm going through. tongue

Diagnosed with CD in '89
2 resections, B12 anemia, blood transfusion
Medication: Pentasa

Regular Member

Date Joined Nov 2007
Total Posts : 68
   Posted 12/7/2007 11:35 AM (GMT -6)   
This is a great place to be...people are so helpful. Thanks to everyone I do feel better about taking it.

New Member

Date Joined Jun 2007
Total Posts : 12
   Posted 12/7/2007 12:16 PM (GMT -6)   
I have been on Entocort for about 7 months now. In the beginning I had a headache for about a week. After that, everything has been GREAT. No other side effects. It has helped me so much.

Regular Member

Date Joined Jun 2006
Total Posts : 267
   Posted 12/7/2007 8:25 PM (GMT -6)   
I have been on Entocort for about 1-1/2 years now, tapering off as we speak because I started Humira about 2 months ago. Entocort is the ONLY med that has worked for my CD, only downside I noticed is swelling of feet/ankles/calves, but Dr. gave me Lasix and when swelling flares up I take Lasix and it goes away. I sing blessings to high heaven for Entocort...haha...good luck to you!
Marci, 38 years old, Rockledge, FL
Dx with Crohn's disease March 2006, currently on bi-weekly Humira, daily 6mg Entocort, daily 2-3x 5mg hydrocodone (for pain), and daily 75mg Effexor, plus 3x per day heavy iron supplements for anemia

New Member

Date Joined Dec 2007
Total Posts : 3
   Posted 12/8/2007 4:51 AM (GMT -6)   
Well i've been on entocort for about a month and a half and I've gained 15 pounds and I can't sleep. I don't know If this is normal. But it is frustrating!!!! Anything I can do? And for some reason my bladder doesn't seem to work I feel like i'm 6 months pregnant i have to pee every 10 mins?

Post Edited (sierra1) : 12/8/2007 2:50:18 AM (GMT-7)

New Member

Date Joined Nov 2007
Total Posts : 5
   Posted 12/8/2007 5:04 AM (GMT -6)   
I loved entocort compared to prednisone. I didn't notice any side effects with it at all. no weight gain, nothing, but everyone is different. I had to switch from entocort to prednisone about this time last year because I had a stricture in my illeum and my GI doc was wanting to avoid surgery, which so far it's better and I haven't needed a resection.
I hope you respond to teh entocort. It helped me a lot!!
Diagnosed with Crohn's July 2006
Pentasa 1g 4x's a day, protonix 40mg twice a day, Asazan 150mg, Prednisone 20 mg, remicade every 4 weeks, cymbalta, B-50, Calcium, Folic Acid, Zinc, digestive enzymes.
Gallbladder removed in 2005.
Lortab 10 prn for pain. I usually take two.
Hospitalized 6 times since January 2007.

New Member

Date Joined Oct 2008
Total Posts : 1
   Posted 10/19/2008 10:47 AM (GMT -6)   
Hi, I have a question for ANYone.
I am also, new here
I have had crohn's disease for 46 years. Back then they did not know what the heck it was and I was 14 having been taken to about 15 doctors before having emergency surgery.
There have been a few colon resections and the meds I have been on have been tolerable. Even the predinsone, even though it was not my favorite.
Actually I have been doing okay and I know what I can and cannot have, and any sign of symptom.
Since really not feeling good over the last couple of months, knowing I was due to go see doc for colonoscopy. Whoopee!! My colon is quite inflammed and he says my rectum looks like raw hamburger. Hate to be graphic, but you understand.
He put me on this Entorcort........and i have been reading the side effects....I guess I do not have to tell you how scared I am. Doc says it is all RARE...but still.....................
Called my pharmacist this morning, as he knows me well. He suggested getting on here and checking things out. Am i being a baby?
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