Question about Entocort EC

Hello, I was on Entocort Ec since January 2009. I was taking 3 pills every morning (9 mg.). I started seeing a new GI doctor and he told me that it's only suppose to be a temp. medication and for me to stop taking it. I asked him if I had to taper off or if I should taper off and he told me that with entocort you don't need to and I can just stop taking it. I did 3 days ago but saw a post yesterday that I really didn't understand and I got scared. Can someone please tell me if it was safe for me to just stop taking it that way. Thank you

Thank you Nanners, I just called the pharmacist and he told me that they usually have you taper off if it started working for you and they will try to taper it down. He said being that it has never worked for me that it is ok to just stop taking it. I on't know why but I am still worried :-( .

Hi Mrs Mitchell, I wouldn't worry too much about stopping it suddenly unless you start to experience a flare-up of your Crohn's. That is the reason why most people taper -- because suddenly stopping the steroids can shock your system, but unless you experience a severe onset of Crohn's symptoms, the sudden stopping is not going to put you in the hospital or otherwise endanger your health.

What are the signs of a adrenal crisis? I am not feeling well and really can't pinpoint what it is. I do have a anorectal abscess that is bothering me but I just don't feel all that well. I don't know if I should start taking it again and taper off.

OK, now I am scared. Does anyone know how soon I would experience adrenal crisis after stopping the Entocort? I want to start taking it again but it has to be taken in the morning and it is to late now. If I start taking it again in the morning will I avoid adrenal crisis? Should I start back taking 3 pills in the morning or 2? I am really scared now........

Well, I started the Entocort EC again this morning because I was so scared about having a adrenal crisis. I started with my usual dosage (3 pills every morning). I was doing some reading and found out that only 10% of the steroid goes into your blood stream. Can someone tell me how I should taper off the entocort? I was going to take my usual dosage for this week and then next week go down to 2 pills and then the following week go down to 1 pill. Does this sound ok? I can't understand why the doctor and pharmasist told me it was ok to just stop taking it if something like a adrenal crisis would happen. They just told me if the crohn's started getting bad for me to start taking it again and didn't mention anything at all about adrenal crisis. Sometimes I feel as if the doctors just don't care what can happen to you. I have 5 kids that I need to take care of and I don't want anything to happen to me because I need to be here for them. I don't have any family and need to be here for my children. This whole thing is so scarey.

Try not to worry about it, you would NOT have missed it, if you ran into some trouble.

Some symptoms, that you are heading towards possible problems. Dizziness, lightheadness, fainting. The same symptoms when you stand up suddenly.

If you like, and if it helps you to feel more comfortable, then by all means taper off slowly. 2 pills for a week, or just a few days, then one pill for a week, or just a few days, and you can even do one pill every other day, then off, there are many ways to do it.

If you are the more active type, and you exercise regularly, or wow, chase 5 kids around, then you are even less prone to having these issues.

The only thing I would warn you about with entocort is to not break up the tablets, don't cut them in half or anything, take the whole tablet.

Take Care

Mrs_Mitchell, the good news is you are taking the Entocort the way the manufacturer recommends: all at once, in the morning.

Your taper plan sounds good. Did you feel better when you reintroduced the Entocort?

I keep reading in these forums that Entocort EC is a temporary med but I've been on it for more than 3 years now and it is great for me.

Should I be worried about some problems from long term use?

WoW, I can't believe it. I feel like I just can't trust the doctors anymore at all. They just don't seem to care. I get so upset because I think if I was the doctors wife or daughter would they be so quick to give some of these medications or tell you to just stop them without tapering off. I am glad that I found this forum because who knows what could have happened to me if I didn't start back on the Entocort EC. NJMOM, do you think I should taper off slower then what I planned on or do you think the way I was going to do it is ok? It's hard to know what to do when the doctor told me to just stop taking it and that with Entocort I didn't need to taper off.

AZjohnny, I was told that Entocort EC was suppose to be temproary (for about 3 months) but I have heard of a lot of people who have taken it for years. I hope someone else can give you a better answer then me because as you can see I am having problems trusting what doctors are saying and I don't trust anything they are trying to give me as far as medication. I feel as if my condition got much worse just from the couple of medications I have taken for crohn's and they aren't even the big one's they are wanting me on now.

Mrs. Mitchell, I'm not a doc, but know that even for docs there are no hard and fast rules for how to taper off Entocort. It's just guesswork. Your plan sounds fine.

As far as docs go, trust but verify.

AzJohnny, Entocort, taken for years, does pose potential problems: adrenal issues, rising blood sugar, vitamin D deficiency, and interference with calcium absorption. Also Entocort allows Crohn's to fester...causing slow damage, some of which might not be reversible. For instance, while on Entocort, my daughter's ability to absorb B12 has declined, and I'm not sure this ability will ever come back.   

The first-pass elimination in the liver of swallowed budesonide (aka Entocort EC) in adults is approx. 85-90%. So, it does not stay in the system for very long. Like AZJohnny I have been on Budesonide for a few years as a remission maintenance drug. Unlike prednisone, Entocort EC has not cleared up my psoriosis so I presume it is being cleared out of my system pretty quickly. That said, if I was going to go off of it I would do a taper.

Also, stay away from grapefruit juice as it interacts with the process that removes the Entocort from the system.

Excellent article, lawgman, thanks.