Experience with Entocort?

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LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 7/24/2009 11:07 PM (GMT -6)   
Anyone have any positive/negative feelings towards Entocort? I did read the shoulder issues experienced by one of the mods after longterm use (sorry, that stinks), but I would only try it for a couple months at most.

As I've mentioned here before, I'm completely asymptomatic if I stay away from carbs, but my G.I. doc wants to see if any drugs allow me to broaden my diet. I agreed to try drug therapy for a few months, but told him I wouldn't consider Prednisone or immunosuppressants again (I figure any longterm side effects from my restrictive diet are less than the ugly drug side effects I experienced 5 years ago). I tried a month of Asacol (9-12/day) with no impact other than headaches and sleeplessness, and now he says that concurrent treatment with Entocort may be effective.

Note that I've never done any foams/enemas/rectal treatments because I've never had any rectal inflammation. When I eat no carbs, I have minimal (if any) histological evidence of UC. When eating carbs, the ulcerations start at the beginning of my colon (or possibly before) but end well before the rectum (in the descending colon), so "treating from both ends" isn't an option.

Thanks for your thoughts!
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/25/2009 6:29 AM (GMT -6)   
I tried entocort a while back and it worked fine. It didn't seem to have as strong side-effects as prednisone. In fact, I didn't really notice any side-effects from it. I used it for a couple of months.

However, if you're managing fine without eating carbs then why not continue that way, instead of having to take entocort?

Just wondering, when you say you're not eating carbs, does that mean you're just not eating foods that are loaded in carbs like potatoes, bread...? Or are you also having to avoid foods that contain even smaller amounts of carbs?

If it's the latter, then I can see why you're wanting to be able to expand your diet.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa suppository occasionally


sore_guts
Regular Member


Date Joined Jun 2007
Total Posts : 185
   Posted 7/25/2009 9:06 AM (GMT -6)   
I tried entocort for 13 days with no effect for me.  I think I should have given it more time, but was flaring very badly at the time and needed to go to pred to get things under control to avoid a hospital stay.  I think I didnt give it enopugh time.  Maybe it would have worked if I'd given it a couple more weeks.
But I think steriods should be used for short periods of time and not as maintanace drugs.  So I have to question your Dr's choice to try it if you are not experiencing symptoms at the moment.  Is your restrictive diet causing other problems?  If not then why change anything at all?
 
 sore_guts
 
Currently in Remission since June 2008!! Backed off to far from spinach/seed diet and started flaring again :(  Back to remission again
 
High magnesium/ beta carotene diet
37 year old female with left-sided UC
lialda 1 pill  3 2 times/day
Digestive Advantage Colitis formula 1/day
 
 


LuckyLindy
Regular Member


Date Joined Feb 2009
Total Posts : 226
   Posted 7/25/2009 11:33 AM (GMT -6)   
Rio in Maryland said...
However, if you're managing fine without eating carbs then why not continue that way, instead of having to take entocort?

Just wondering, when you say you're not eating carbs, does that mean you're just not eating foods that are loaded in carbs like potatoes, bread...? Or are you also having to avoid foods that contain even smaller amounts of carbs?

If it's the latter, then I can see why you're wanting to be able to expand your diet.



I have symptom free with no signs of UC only if I eat less than about 20g of carbs a day. This limits me to meat, eggs, and some vegetables (I even have to be careful with peppers). No prepared foods, very few nuts, no fruit, no higher carb veggies, no starches, no grains, etc. I actually don't mind the diet THAT much, but the doctor suggested I try to expand my diet so I agreed to try. Like most MDs though, he isn't exactly on top of nutrition/diet awareness (e.g. he didn't understand why I couldn't have milk, and didn't believe that it had any carbs).

It's just an experiment ... if drugs don't change anything, I'll just go back to the diet that works and stop taking drugs. The diet isn't causing me any side effects, but I'd guess there are potentially longterm (20+ years down the road) effects of basically eating an anti-vegetarian diet.
33 year old male
diagnosed severe pancolitis in 2004, unresponsive to all drugs
turned down recommendation to have j-pouch surgery
have been mostly symptom free since 2004 via diet modification (removed all carbs)

Post Edited (LuckyLindy) : 7/25/2009 7:13:55 PM (GMT-6)


Rio in Maryland
Veteran Member


Date Joined Nov 2007
Total Posts : 891
   Posted 7/25/2009 12:03 PM (GMT -6)   
It's great that you've at least found a diet that gets your symptoms under control.

If you're concerned about not getting enough nutrition from veggies then you could juice some of them - if that's within your carbs limit. My vegetable intake is limited too (quite a challenge since I'm vegetarian). I also haven't eaten fruits in months and avoid fruit juices because they don't seem to go down well for me.
Rio, 33 year old male. Diagnosed with UC in 2006
Azathioprine (stopped), 4800 mg Asacol
VSL#3, Metamucil
Vitamin E enema or Canasa suppository occasionally


Blue220
Regular Member


Date Joined May 2008
Total Posts : 191
   Posted 7/25/2009 12:37 PM (GMT -6)   
I was on Entocort for nearly a year a while back. After that long, I couldn't sleep very well, I was having odd thoughts, really bad headaches (migraines at least twice a week) and I was overall annoyed.

It worked wonders for me though.

Just don't be on it for very long and you'll be fine.

My side effects started to really come through after about 6 months. I had tried going off it for a while and I would keep flaring. It took a long taper for me to be ok. I hope I never have to do that again.
22 years old

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

Taking Lialda 3x a day<---NOT ANYMORE. I got pancreatitis from them (?).
I stopped taking Lialda 8-19-08. Ugh!
All I take now is just my 3 Entocort, and 1 iron pill in the afternoon.

NOW back on Lialda as of 8-30-08, not the cause of pancreatitis.
Going in for an endoscopic ultrasound on 9-19-08 to check things out.
Still on Entocort and iron. Yay...

Haven't been on here in a while (finally graduated college).
Update as of 5/26/09 - Now taking Imuran 100mg/day.
Taking Caltrate, iron, A, D, and B12. I still take 2 Lialda a day.
At least I'm off the Entocort.

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