ENTOCORT QUESTION

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cagio1
Regular Member


Date Joined Mar 2007
Total Posts : 56
   Posted 8/11/2009 11:28 PM (GMT -6)   
Hi all,
I have a question.  Has anyone here been on Entocort for an extended amount of time (more than 3 months)?  Can't find info on line about length of time use, possible issues from continued use etc.  I know it is a steroid but...works for me and is nothing like pred... hate that drug.
Thanks
Chris
DX with (pan colitis) UC 9/02 while pregnant
Calcium multivitamin
Iron (alot every day.. perpetually anemic)
Librax, 3x day
Mild bronchial asthma too
6MP 75mg started beginning of May 09


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/12/2009 6:25 AM (GMT -6)   
I have always had excellent results from entocort for my chronic D. Problem is, the docs will only prescribe a few weeks worth and I always end up back where I started after some days of blessed relief. Apparently you can be on full dose for as long as 8 weeks, then on 2/3 for several months, then taper over a long period of time. But my docs never go anywhere near that length of time. Long term side effects can be bone loss and screwed up endocrine system, like any steroid med, but entocort is not absorbed much so these negative effects are much less likely.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


cagio1
Regular Member


Date Joined Mar 2007
Total Posts : 56
   Posted 8/12/2009 12:53 PM (GMT -6)   
Thanks Mitzo,
Like you I was diagnosed after quitting smoking. The Entocort really works for me (I believe) and has kept me in remission considering the stress I have been under lately (diagnosed with breast cancer... surgery etc.) Amazing considering I always seemed to flare under stress.
Thank you for your response. I am tappering but with Entocort it is a slower taper... I see a difference from 3 pills to 2 pills... takes a while for my body to adjust.
Take care
Chris
DX with (pan colitis) UC 9/02 while pregnant
Calcium multivitamin
Iron (alot every day.. perpetually anemic)
Librax, 3x day
Mild bronchial asthma too
6MP 75mg started beginning of May 09
Entocort 2 3 mg tabs day


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/12/2009 2:29 PM (GMT -6)   
So how long have you been on it? My negative side effects were a bit of acidic stomach during the first days of taking it, and some glossitis (inflamed tongue). Positive side effects were the world's best controllable BMs with excellent fully firmed stools, plus greatly reduced stomach bloating - I go down a pants size overnight. Then we taper the entocort and I go back to D and bloating.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


cagio1
Regular Member


Date Joined Mar 2007
Total Posts : 56
   Posted 8/12/2009 2:50 PM (GMT -6)   
I have been on it since about April. I feel that same about the BM's. Amazing feeling. The closest to feeling "normal" (before UC) I have no negative side effects as of now but who knows what havoc it is playing on my insides (bones etc). Right now, I am just happy to be in a type of remission and hope to get off of it..
Chris
DX with (pan colitis) UC 9/02 while pregnant
Calcium multivitamin
Iron (alot every day.. perpetually anemic)
Librax, 3x day
Mild bronchial asthma too
6MP 75mg started beginning of May 09
Entocort 2 3 mg tabs day


jujub
Elite Member


Date Joined Mar 2003
Total Posts : 10407
   Posted 8/12/2009 3:34 PM (GMT -6)   
I was on Entocort for more than a year. I got osteoporosis with a leg fracture and avascular necrosis of the shoulder.
Judy
 
Ulcerative colitis forum co-moderator
 
Moderate to severe left-sided UC diagnosed 2001.
Flared for 5 years, finally in remission with Remicade since March 2006.
Avascular necrosis in both shoulders is my "forever" gift from steroids.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. 
"My life is an ongoing medical adventure"
 


SwollenColon
Regular Member


Date Joined Nov 2006
Total Posts : 190
   Posted 8/12/2009 3:42 PM (GMT -6)   
I've been using it for a couple years straight. It works wonderfully and I've had zero side effects.

Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/12/2009 7:19 PM (GMT -6)   
I really want to go back on it. I am rock bottom now, all the worst D and bloating is back and I am out of options besides entocort. Going back to the GI soon...
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


CrohnsPatient
Regular Member


Date Joined Feb 2008
Total Posts : 314
   Posted 8/12/2009 9:03 PM (GMT -6)   
Ive been off and on, more on time then off for 7 years now. And been on it continuously for some time over a year and a half or so. Not always at incredibly high dosages, but always started that big. Im pretty dependent even if on just 5mg, even with humira and methotrexate and all the normal gang of other meds. Ive never had any problem with prednisone or budesinide(entecort) budesinide is close to prednisone, just known for less side effects. I have no side effects anyways. Anyone taking it a long period of time though should atleast take an over the counter Vitamin D and chew say 3 Tums a day, because of the calcium, and that will help quite a bit with the bone issues.

Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 8/13/2009 6:08 AM (GMT -6)   
Well, I have bone loss too - and I am a fit athletic 52-year-old male. 7 steroid doses over the past 6 years including pred, enemas, and entocort, plus years of malabsorption of everything, I guess.
23 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 8/13/2009 6:21 PM (GMT -6)   
I was on Entocort for over a year starting last year. It got me emotionally more than anything when I was nearing 10 months of taking 3 pills a day. It was rough...but my guts were better than ever.

I agree with the slow taper mentioned above. I tapered too fast, and it wasn't good! I went down one pill and stayed there for a couple weeks. I just went with what my body could do. I was on one pill for a long long time. ((I should say that I started tapering after a year on the dose of 3/day))
22 years old

Diagnosed with moderate/severe UC June 2007, I've had it since December 2006.

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
2 Lialda/day.
Vitamins - Caltrate+D, iron, A, B12,
Flintstone Complete+iron, and aloe vera pills/juice.
At least I'm off the Entocort. =]

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