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Experience with Entocort?

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Ulcerative Colitis
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Posted 7/25/2009 5:07 AM (GMT 0)
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!
Posted 7/25/2009 12:29 PM (GMT 0)
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.
Posted 7/25/2009 3:06 PM (GMT 0)
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?

 

Posted 7/25/2009 5:33 PM (GMT 0)

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.
Posted 7/25/2009 6:03 PM (GMT 0)
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.
Posted 7/25/2009 6:37 PM (GMT 0)
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.
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