Question about Entocort EC

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Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/7/2009 7:49 AM (GMT -7)   
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

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/7/2009 8:07 AM (GMT -7)   
Hi Mrs_Mitchell,
 
Its always been my understanding that you are to taper off of steroids.  I have taken Entocort in the past, and I have always tapered off.  Maybe you can call your pharmacist and ask them.
 
Good luck!
Gail*Nanners*
 
 
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/7/2009 8:46 AM (GMT -7)   
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 :-( .

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/7/2009 8:49 AM (GMT -7)   
He also mentioned that Entocort is really only suppose to be taken for 3 months. I have been on since January and I never noticed any change but for some reason my old GI doctor kept me on.

Carnival Huckster
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Date Joined Oct 2009
Total Posts : 159
   Posted 11/7/2009 9:48 AM (GMT -7)   
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.
34 year old male
Crohn's Disease for 12 years
Current Medications: 9mg entocort
Finatical SCD for past 90 days (on and off for 10 years)
4,000 mg MSM for 30 days
Vitamins E, D, C
No surgeries


njmom
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Date Joined Apr 2006
Total Posts : 1884
   Posted 11/7/2009 11:37 AM (GMT -7)   
Tapering from Entocort is similar to tapering from prednisone, in the sense that you should taper mainly to avoid an adrenal crisis,which can be life threatening. While it is true Entocort is targeted mainly at the terminal ileum, a percentage (and nobody is sure how much) is also released into your entire system. Even 3 mg daily can cause adrenal suppression. 
 
The tapering is done slowly to allow your adrenal glands time to wake up, in order to avoid a sudden adrenal crisis. Since you were at the highest recommended dose of Entocort for so long, it is likely you did have some adrenal suppresssion.
 
But at this point, now that it has been three days, my guess is adrenal issues would have shown up, by now. So it looks like you got lucky:)     
 
   

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/7/2009 4:13 PM (GMT -7)   
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.

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/7/2009 4:40 PM (GMT -7)   
http://www.nlm.nih.gov/medlineplus/ency/article/000357.htm

*activated your link:)*

Post Edited By Moderator (Nanners) : 11/8/2009 6:57:25 AM (GMT-7)


Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/7/2009 4:57 PM (GMT -7)   
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........

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/7/2009 5:05 PM (GMT -7)   
Sweetie go to the ER if you are worried. I am kinda suprised you were suppose to take them all at once I took one three times a day.  I am sorry I did not mean to scare you.


Forum Co-moderator - Crohn's Disease/Thyroid Disorders:_All comments have the caveat contact your local health care provider.

I will find a way or make one. –Phillip Sidney 1554-1586

All that I am and all that I shall ever be, I owe to my Angel Mother.

The Bucket List- Have you found joy in your life?  Has your life brought joy to others?

Make sure your suffering has meaning…

Post Edited (MMMNAVY) : 11/7/2009 5:08:29 PM (GMT-7)


Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/8/2009 6:17 AM (GMT -7)   
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.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 11/8/2009 6:59 AM (GMT -7)   
I think the way you are weaning sounds good. I hope that your wean goes seamless for you and you are feeling better soon. Big Hugs!
Gail*Nanners* Co-Moderator for Crohns Disease and Anxiety/Panic Forum
Crohn's Disease for over 33 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium  w/Vit D, and Xanax as needed. Resections in 2002 and 2005. Also diagnosed with Fibromyalgia, Osteoarthritis, and Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
It's scary when you start making the same noises As your coffee maker.
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*

Homeboy
Veteran Member


Date Joined Dec 2005
Total Posts : 637
   Posted 11/8/2009 12:48 PM (GMT -7)   
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
Humira 2 times a month.
Lialda 2 X day
Imuran 200mg day
Phenergen PRN
Remeron 30mg day
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CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 11/8/2009 9:55 PM (GMT -7)   
A while back I was on 9 mg of Entocort a day. My nurse practitioner had me stop entocort and replace with prednisone. And a day or two later.... A huge flare. Then she wanted me to get a cat scan to see what was causing the pain. Well just some inflamation... etc. From now on I will be sure to taper entocort. Some people may be different, but it took a good week for the flare to go away and the pred to kick in. Just my two cents.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/9/2009 10:16 PM (GMT -7)   
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?

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/10/2009 3:05 PM (GMT -7)   
Hello njmom, I didn't feel any different from the few days I stopped taking it and when I went back on. I think I got so scared when I read about the adrenal crisis that I made myself feel sick because I suffer from very bad anxiety and I got very scared. I have been back on the 3 pills every morning and next monday I plan to take two and the following monday I plan on going down to one. One thing I did notice and have been noticing but thought it was all in my mind is about a week before getting my period I will start to feel crappy and will use the bathroom a lot. When I first wrote this post I was in that week time frame and as soon as I got my period I have felt better (except for the anorectal abscess that is driving me crazy but thats on another post). One thing that I can't understand is why the doctor and pharmisit told me it was ok to just stop taking it and they didn't tell me to watch out for any signs that I could be having a adrenal crisis.

AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/10/2009 3:23 PM (GMT -7)   
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?
AzJohnny
 
I feel a whole lot more the way I do now than I did a little while ago.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/10/2009 3:24 PM (GMT -7)   
I'm glad you are feeling better! It's not easy, separating out Crohn's and meds symptoms from other things that are going on.
 
I've taken to looking up prescribing information for every med suggested for my daughter. The prescribing information for Entocort EC clearly says the following as a precaution:

"When ENTOCORT EC capsules are used chronically, systemic glucocorticosteroid effects such as hypercorticism and adrenal suppression may occur." 

http://www.entocortec.com/PDF/ENTOCORT_PI.pdf 

 

Mrs_Mitchell
Regular Member


Date Joined Nov 2009
Total Posts : 26
   Posted 11/10/2009 4:26 PM (GMT -7)   
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.

AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/10/2009 5:17 PM (GMT -7)   
Well Mrs. Mitchell it sounds to me like your following a reasonable plan.

I only take 1 pill (3mg) per day so I'm not going to worry about the possible problems because they seem a lot less than the side effects of other meds.

I'll keep an eye out for how your doing and let you know if I go "moon face" or something.

Here's hoping we all stay healthy and happy!
AzJohnny
 
I feel a whole lot more the way I do now than I did a little while ago.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/10/2009 8:20 PM (GMT -7)   
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.   

AzJohnny
Regular Member


Date Joined Sep 2006
Total Posts : 171
   Posted 11/10/2009 10:03 PM (GMT -7)   
Thank you njmom, sounds like I need an appointment with my GI.
AzJohnny
 
I feel a whole lot more the way I do now than I did a little while ago.


lawgman
Regular Member


Date Joined Mar 2005
Total Posts : 27
   Posted 11/11/2009 9:27 AM (GMT -7)   
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.

lawgman
Regular Member


Date Joined Mar 2005
Total Posts : 27
   Posted 11/11/2009 9:44 AM (GMT -7)   
Also, check out: Oral Budesonide for Maintenance of Remission of Crohn's Disease: A Pooled Safety Analysis - http://www.medscape.com/viewarticle/589529

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 11/11/2009 2:11 PM (GMT -7)   
Excellent article, lawgman, thanks.
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