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Margie63
Regular Member


Date Joined Feb 2011
Total Posts : 95
   Posted 5/26/2011 10:00 AM (GMT -6)   
My daughter's doctor has now prescribed Entocort at 9 mgs. to begin with for 8 weeks. She has not been on this but on Prednisone she did get the facial hair, the puffiness, all those dreaded side effects which at 19 is pretty devastating, but she came off of Prednisone several months ago. He feels she is experiencing a slight flare at the moment so he is beginning Entocort. She is due to come off of 6mp soon and begin Remicade within a week or two. I am hoping this will prove to be the miracle drug for her as it has been for so many others.

My question is with Entocort, for a short 8 week period, does anyone have experience with whether she will get the puffy face and facial/back hair growth like with the Prednisone? Just wondering what to expect.

I am hoping that other's experiences with this will alleviate our worry about these nasty side effects.


Thanks.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 5/26/2011 10:11 AM (GMT -6)   
I rarely get the side effects on Entocort that I do on Pred. I just still got the hungry's, but I didn't get any of the other stuff. But we are all different. But for the most part, I think most have much less side effects with Entocort. Good luck!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 5/26/2011 10:16 AM (GMT -6)   
Entocort usually has a lot less side effects than prednisone. I know I didnt really notice much from 9mg of it when I was on it for sometime. Prednisone on the other hand messes me up side effect wise. So I think she might have more luck with the entocort and the side effect profile will be easier for her to handle. Lets hope. Good luck
Going through hell? Keep going....

Margie63
Regular Member


Date Joined Feb 2011
Total Posts : 95
   Posted 5/26/2011 10:20 AM (GMT -6)   
Thanks so much for everyone's quick responses. This will put her much more at ease, but of course, I do know that everyone is different. Just wanted to ease her nerves a little. It is Summer and she had a dreadful experience with Prednisone around Christmas and just simply refused to leave the house.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/26/2011 10:22 AM (GMT -6)   
As Nanners has said I think that most people get very little in way of side effects with entocort.
Ds however became plastered in a rash from head to toe(which diappeared when he was weaned of Entocort) but he developed pretty severe acne that has taken well over a year to get rid of. As for any other side effects, he had none.

Margie63
Regular Member


Date Joined Feb 2011
Total Posts : 95
   Posted 5/26/2011 10:24 AM (GMT -6)   
Is he normally prone to acne or was this out of the blue?

Thanks by the way for responding.

sooper
Veteran Member


Date Joined May 2003
Total Posts : 815
   Posted 5/26/2011 10:28 AM (GMT -6)   
Here is to hoping she has a good summer Margie : ) I think its great your on here to try and help her! Also will mention that remicade worked well for me but ran into some complications. Keep the hope alive though. That stuff helps a lot of people big time.
Going through hell? Keep going....

Margie63
Regular Member


Date Joined Feb 2011
Total Posts : 95
   Posted 5/26/2011 10:29 AM (GMT -6)   
Thanks so much for the words of encouragement.

vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 5/26/2011 11:11 AM (GMT -6)   
He had minor teenage spots a few years previously but on a scale of 1-10 it was a 1 or 2,what he got within a couple of weeks of starting entocort was way over the 10! I wouldn't worry needlessly though, although it is a known side effect I don't think that most takers get it and if your daughter was unlucky enough to do so get help for it fast. I assumed that once he was off the entocort his skin would go back to normal by itself but it didn't.

dfdavedf
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 5/26/2011 2:59 PM (GMT -6)   
Hi
I was on prednosone and hated it. I could not sleep and it made me feel crazy, so I went to entocort.
I have been on entocort for about 6 months. I do not have any any reaction to this drug.
It is a much lower dose and is highly effective for small bowel isues.
The downside is cost. I get mine from Canada for about 1/2 the cost
David
 

Kiwi12
Regular Member


Date Joined Aug 2010
Total Posts : 486
   Posted 5/26/2011 4:12 PM (GMT -6)   
like dfDavedf it works really well for me with no side effects at all - been on it four months this stretch ans so far so good. Good luck with the reme :)

Lesley in NZ

Margie63
Regular Member


Date Joined Feb 2011
Total Posts : 95
   Posted 5/26/2011 4:23 PM (GMT -6)   
Thanks.

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 5/28/2011 1:51 AM (GMT -6)   
Hi Margie, I am just now starting my taper from Ento after being 9mg a day for more than a year.  It was helping me tremendously.  I can tell I am tapering as my insides are feeling less well with each taper step.  I have gained NO weight, no puffy face, nothing.  I am still losing weight as a matter of fact.  It is the less fearsome drug of the 2.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Osteopenia DX July 2010
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
Caltrate-D 1000mg/day

73monte
Veteran Member


Date Joined Mar 2007
Total Posts : 1116
   Posted 5/29/2011 4:58 AM (GMT -6)   
Is there a safe length of time that one could stay on Entocort? Also, how often can this drug be used? With Prednisone the less often the better, and just wondering about the Entocort.

Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14994
   Posted 5/29/2011 10:32 AM (GMT -6)   
Entocort is still not considered a med you should use longtime, although some have. It still can cause the bone damage etc that Pred can if used for a long time. Hugss!
Gail*Nanners* Co-Moderator for Crohns Disease
Crohn's Disease for over 35 years. Currently on Asacol, Protonix, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!

mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 5/29/2011 4:46 PM (GMT -6)   
As was explained to me, my bone loss started before the meds, I was prescribed Ento and a bone scan the same day.  The Ento has a lot less likelihood of the bone issues of predisone.  But any long term steroid use should come with DEXA bone scans, you would think anyways.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Osteopenia DX July 2010
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
Caltrate-D 1000mg/day

dfdavedf
Veteran Member


Date Joined Jan 2010
Total Posts : 1011
   Posted 5/30/2011 10:42 AM (GMT -6)   
THe following is from the Entocort site. I understand it to say 8 weeks at 9 mg, then up to 3 months at 6 mg, then if I understand this, to stop this drug.
My doc talked to me about moving to 3mg for 3 months, but it does not match what the manufaturer is saying.

Dave

DOSAGE & ADMINISTRATION
The recommended adult dosage for the treatment of mild to moderate active Crohn's disease involving the ileum and/or the ascending colon is 9 mg taken once daily in the morning for up to 8 weeks.

Repeated 8 week courses of Entocort EC can be given for recurring episodes of active disease.

Following an 8 week course(s) of treatment for active disease and once the patient’s symptoms are controlled (CDAI <150), Entocort EC 6 mg is recommended once daily for maintenance of clinical remission up to 3 months. If symptom control is still maintained at 3 months an attempt to taper to complete cessation is recommended. Continued treatment with Entocort EC 6 mg for more than 3 months has not been shown to provide substantial clinical benefit.
Pentasa (1,500 per day for the last 6 months), Vit D and B complex, fish oil and SCD vit. Entocort (6 mg and hoping to get to 3 next doc visit). SCD since Nov 2010. Amitriptyline for sleeping
Feeling good, almost every day!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 5/31/2011 9:32 PM (GMT -6)   
I wouldn't worry about what the manufacturer is saying in terms of length of time. Your doc is the best judge.
 
The manufacturer is just giving a guideline. A clinical trial showed that taking 6 mg Entocort for longer than 5 months is not likely to improve the chances of falling out of remission, so the manufacturer is probably using that as a guideline.
 
BUT my daughter did fine on modified SCD and just one pill Entocort for years, so each person is different. In fact, the only time she was hospitalized was when she tried to go completely off the Entocort in 2006.
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