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Crohn's Disease Forum » Treatment » Entocort and weight gain


01-16-2017, 03:02 PM   #1
HaileyJ78
 
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Entocort and weight gain

Hi everyone I have just been diagnosed with mild crohns in the end of my small intestine and my GI prescribed 9mg of entocort a day for 3 months and was wondering if anyone was on this and if you experienced any weight gain?? I have had problems in the past with anorexia and I'm terrified of gaining weight. Does anyone have tips to avoid the weight gain? Thanks so much!
01-16-2017, 03:55 PM   #2
Jabee
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I've been taking Entocort for some time, and have not gained any weight from it. It isn't a systemic steroid like prednisone which does cause weight gain. My GI uses Entocort as a maintenance medication; others recommend using it for only three months.
01-16-2017, 04:48 PM   #3
aypues
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I've been taking Entocort for some time, and have not gained any weight from it. It isn't a systemic steroid like prednisone which does cause weight gain. My GI uses Entocort as a maintenance medication; others recommend using it for only three months.
Be very careful with Entocort as a maintenance med. I was on it 5 years and now have osteopenia. Not sure if it was from the Entocort itself or just the Crohn's malnutrition. It isn't approved for long term use, and I had a burnout GI doctor who was ready to retire and wasn't really treating me properly. It wasn't even that effective after awhile. I don't remember any weight gain on it.
01-16-2017, 04:54 PM   #4
Retta
 
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I have been on entocort and the only thing it did for me, is made my skin so thin, bruising skin tears I, had the skin of a 90 year old .
01-16-2017, 05:17 PM   #5
Jabee
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Thanks for giving me that information about your osteopenia, and I'm sorry you have it. I probably need a bone density scan anyway since it's been a few years since my last one. My GI really doesn't want to bump me up to biologics yet (6MP gave me severe pancreatitis), especially since my crohn's is pretty mild and tends to vanish in between flares. He's a really great doctor and I trust him, but I will check in with him about it.
01-16-2017, 05:34 PM   #6
Lizzie
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Hi, welcome to the forum. I was on Entocort for a few month and didn't put on weight, so it isn't inevitable. It must be difficult for you having Crohns and past difficulties with anorexia - with Crohns the GIs are always weighing you and chastising you for weight loss/failure to gain weight. I find it wearying myself. I'm currently a perfectly normal weight but the GI seems to want me to be on the high side of normal and not just in the middle of the BMI range. I guess that's because Crohns can cause rapid weight loss and they want you to have a bit of surplus weight to lose for when you're ill again.
01-16-2017, 11:20 PM   #7
aypues
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Thanks for giving me that information about your osteopenia, and I'm sorry you have it. I probably need a bone density scan anyway since it's been a few years since my last one. My GI really doesn't want to bump me up to biologics yet (6MP gave me severe pancreatitis), especially since my crohn's is pretty mild and tends to vanish in between flares. He's a really great doctor and I trust him, but I will check in with him about it.
I thought I had mild Crohn's too but many people have the disease without many symptoms and all the while it's doing irreparable damage. I was tipped off by accident when I changed to Kaiser and they found my extremely low iron and ferritin from active Crohn's while I felt pretty ok. Ended up with 4 major strictures that I kind of got used to or something!! When was your last MRI Enterography? Colonoscopy? I would not accept any doctor that advocates Entocort long term...it's bad medicine. I also don't believe in mild cases of Crohn's...that's like saying you have a mild Ebola or a mild cancer. It's an aggressive disease that needs to be managed as such and even if you're feeling ok, that's not indicative of the true course of the disease. It needs to be evaluated empirically (not clinically/symptomatically). I would def get a 2nd opinion and not from a GI generalist, but a GI that specializes in IBD with additional training. That was the difference for me anyway.

Last edited by aypues; 01-17-2017 at 02:45 AM.
01-17-2017, 12:11 AM   #8
Jabee
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I had a CTE scan in October that found some narrowing in my terminal ileum due to chronic inflammation, but a capsule endoscopy was clear in July. CTE scan in March was done when I was hospitalized and showed mild active inflammation. My last colonoscopy was not quite a year ago, and it was clear. The crohn's has been primarily in my upper small intestine so it's tough to biopsy.

I understand what you say about crohn's not being mild, but it seems pretty clear to me that different cases are more or less aggressive. So I think it's fair to say that the severity of crohn's varies from person to person.

I found the information on Entocort in the following article helpful:

http://www.medscape.com/viewarticle/589529
01-17-2017, 02:49 AM   #9
aypues
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You were hospitalized for what? Crohn's? If so I wouldn't call that mild.
Have you had a fecal calprotectin test done? I'm curious what the level is.
I didn't have many symptoms and my level was very elevated, over 800.
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