Experience with Entocort

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johnnypa
Regular Member


Date Joined Mar 2003
Total Posts : 40
   Posted 4/22/2008 11:23 AM (GMT -7)   
Hi all,
 
First let me start off with a little background information. I am 27/m who was diagnosed with Crohn's around age 8. At the time, I was missing a lot of school due to fevers and stomach pain and finally I was diagnosed after a colonoscopy at Children's Hospital. My Crohns is located in the ileum and has traditionally been extremely mild. So far I have lived a very "normal life" (college, parties, anything a 20-something does...use your imagination) and have not really experienced the worst that this disease has to offer. I visit this site quite frequently and read your posts and certainly admit that I have been extremely lucky with my mild Crohns (my GI doctor reminds me of that as well). My whole life, treatment has consisted of Azulfadine daily which then turned to taking 4 grams of Pentasa daily as that became available. The only symptoms I experience random stomach pains, which I sometimes goe weeks/months without having, and something I call the "Crohn's Fever" which feels like I have a fever but it's only around 99.1 or so.
 
Anyways, I have recently been undergoing increased stress in my life with my job (which keeps me very busy) and deaths in the family. "Coincidentally" my Crohns began to become a bit more active. The stomach pains began coming on a daily basis and actually a few times a day. During this time I also did notice my appetite decreasing and I lost about 10 lbs.
 
So recently my doctor decided to try Entocort in addition to my 4 grams of Pentasa. He suggested 9 mg a day for 1 week and then for me to check back with him. Note by the time he did prescribe this, I did feel as if my little flare-up was starting to subside. I began taking the Entocort and about 4 days into the treatment noticed that I was having slight migraine-type headaches, random soreness in some joints/muscles, and a flushed feeling in my face. I informed my doctor of this after 1 week of the treatment and he asked me to stop the Entocort for three days to see if it was the drug. Sure enough, those symptoms went away after the three days and I also wasn't experiencing much stomach pain at all. Now he has me taking 3 mg a day for the first week, 6 mg a day for the second, then 9 mg a day for the last week....hoping I will be able to better tolerate the medicine. Right now I am on day two of the 3 mg of Entocort and am dreading the return of the side effects. This weekend I am traveling to Pittsburgh (I live in the Philly burbs) for a friends wedding and certainly do not want to be thinking about my Crohns...I guess I've been spoiled with my stomach not really impacting my life at all up until this point. I almost have a feeling as if the Entocort will aggrivate my Crohns.
 
Has anyone had any similar experiences with Crohns or Entocort? I do know that my problem may seem very minor given the complications people can have with this disease, but I'd rather vent a bit to people who also have the disease and can truely understand how it feels. Note I also take 50mg of Sertraline HCl (Zoloft) a day for anxiety.
 
Thank you for reading (if I didn't put you to sleep).
 
-John
 
 

Pooie1981
Regular Member


Date Joined Mar 2008
Total Posts : 274
   Posted 4/22/2008 2:48 PM (GMT -7)   
Hi John! I don't have Crohn's but do have Colitis. In any case... I was recently taking Entocort and found I had the same symptoms you have described.. the flushed face, mild headaches.. I even had the shakes for a few days. I found most of these went away after the first couple of days.. except the headaches. I was only taking it for 4 weeks. It was prescribed to try to help me thru a flare and it seemed to help for the first 2 weeks then I got my abdominal pains back during the last two weeks. I am not on it anymore.

Good luck with the wedding, don't worry about it I think you will be fine. And in any case.. the more you worry or stress about things the more symptoms will become aggravated. Think good thoughts and u should be fine. :O)
Ulcerative Colitis Diagnosed May 2004
Sulfasalazine 500MG 4 times per day
Prednisone 5MG 3 per day for next 10 days
Daily Vitamin for Women and Folic Acid


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/22/2008 3:02 PM (GMT -7)   
Entocort should not aggrivate your Chron's though it certainly can cause the other symptoms you mentioned. I say should not though not will not because I always have the exact reaction to any medication that my Rhuemotologist says I absolutely will not have.
We are all different.
Sj

Hondamum
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 4/22/2008 3:03 PM (GMT -7)   
hi, sorry for my ignorance what is entocort??

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/22/2008 3:06 PM (GMT -7)   
Entocort is a steroid use to treat inflamation.
sj

Hondamum
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 4/22/2008 3:10 PM (GMT -7)   

thanks, i dont know if i just havent been on that type of med or if it isnt used in UK?!

only been on predisone


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 4/22/2008 3:14 PM (GMT -7)   
The two are related but entocort is more specific to the digestive tract and is sometimes given in an enema.

Hondamum
New Member


Date Joined Apr 2008
Total Posts : 8
   Posted 4/22/2008 3:16 PM (GMT -7)   
ah ok....thanks...would rather not be on any steroids, have managed to be steroid free for 18 months now :-)

johnnypa
Regular Member


Date Joined Mar 2003
Total Posts : 40
   Posted 4/22/2008 3:22 PM (GMT -7)   

Thank you everyone for the replies.

In the past I didn't react well to steroids but Entocort is supposed to be easier to take. I'm almost at the point of stopping the Entocort and seeing what happens. My stomach did not bother me at all when I stopped it this past weekend, and only started to once I resumed taking the medication.


Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 4/22/2008 3:33 PM (GMT -7)   
johnnypa - Are you still on the Pentasa?
I was on Entocort (9mg) and Pentasa and I actually found that all the side effects I was experiencing was due to the Pentasa and not the Entocort like I thought.
I went off the Pentasa (switched to Salofalk) and within days all my side effects were gone.

Just an idea?
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g


johnnypa
Regular Member


Date Joined Mar 2003
Total Posts : 40
   Posted 4/22/2008 3:41 PM (GMT -7)   
Interesting.

Yes, I am still on 4 g of Pentasa a day. However, I have been on Pentasa for about 8 years and have been handling it well.

It would be ironic if I actually didn't have anxiety and the anxiety symptoms I felt were actually Pentasa side effects. Then I wouldn't need the Zoloft, which I would love...

Megera
Regular Member


Date Joined Feb 2008
Total Posts : 92
   Posted 4/22/2008 4:19 PM (GMT -7)   
I figured the side effects I was experiencing were a combination of the two meds - ie: by themselves I was fine but taking them together was giving me side effects. I seem to be more prone to weird side effects when I'm taking more than one medication.

I have bad anxiety too but mine has calmed down significantly - I don't know if I can say it's because I'm off the anti-depressants/etc or if it's because I'm better mental health wise... I still keep my bottle of ativan close by just incase ;-)

I wasn't on Pentasa all that long (about a month) and I started the Entocort a week after the Pentasa.
Current:
Dx: Crohn’s Ileitis as of 22/02/08
Rx: Salofalk 4g/day (26/02/08)
6mg Budesonide (for the next 6 weeks as of 04/04/08)

Discontinued meds:
Asacol 2.4g
Pentasa 4g

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