Entocort--effectiveness for UC?

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wantstogetbetter
New Member


Date Joined Nov 2008
Total Posts : 10
   Posted 11/27/2008 10:20 PM (GMT -6)   
Hi everyone,

I just came across this forum. I am glad I did, and thank you for having me!

I have a fairly severe case of UC. So far the only thing that will get me into remission is prednisone, and when I taper off it, I have a flare. Imuran, Remicade, and Humira did not work for me. Anyway, I guess like to many of us here, I am in the middle of a flare-up.

My GI recently suggested entocort capsules (3X3mg/day). Does anyone have any experience on the effectiveness of entocort, especially for a fairly 'tough case'?

Thanks!

jenjim
Regular Member


Date Joined Apr 2008
Total Posts : 55
   Posted 11/27/2008 10:36 PM (GMT -6)   
I didn't have any success with Entocort, but I hope it works for you. It was really expensive, and was much less effective than Pred for me, so I switched back to Pred. As we all know, what works for one person may or may not work for another, so I guess if your Dr is recommending it, maybe you should consider giving it a try. I know it is supposed to have a lot less side effects than Pred.
Good luck.
Jenjim

Judy2
Forum Moderator


Date Joined Mar 2003
Total Posts : 9363
   Posted 11/28/2008 2:01 AM (GMT -6)   
Entocort helped me a little, but it hurt me a lot more. It does have fewer side effects for most people and is therefore preferable to Prednisone, but for some of us it is absorbed systemically and can have very bad effects. I'd say give it a try, if it works for you it's probably safer than staying on Prednisone long-term.
Judy
 
Moderate to severe left-sided UC (21 cm) diagnosed 2001.
Avascular necrosis in both shoulders is my "forever" gift from Entocort.
Colazal,  Remicade, Nature's Way Primadophilus Reuteri. In remission since April, 2006.
"My life is an ongoing medical adventure"
 
Co-Moderator UC Forum
Please remember to consult your health care provider when making health-related decisions.


Mitzo
Veteran Member


Date Joined Dec 2007
Total Posts : 536
   Posted 11/28/2008 7:16 AM (GMT -6)   
Entocort worked for me before marvellously, but it doesn't get to the distal lower left side inflammation if taken orally.

21 years of UC which started after quitting smoking. In and out of flares which are usually triggered by antibiotics. Latest issue is endless diarrhea without blood or mucous.

 

  • 2 500mg Pentasa a day
  • Psyllium powder
  • Culturelle probiotic


wantstogetbetter
New Member


Date Joined Nov 2008
Total Posts : 10
   Posted 11/28/2008 12:57 PM (GMT -6)   
Thanks. I have been on it for two weeks so far, got sick last week (very bad sore throat), and because they weren't sure if it was viral or bacterial, I was put on antibiotics just in case. Anyway, I am right now going through a bad flare...

Asia
Regular Member


Date Joined Aug 2005
Total Posts : 188
   Posted 11/28/2008 7:13 PM (GMT -6)   
Entocort worked almost instantly with me. I loved Entocort very much. I was on it for two years.
I didn't find any side effects with a 9mg dose/day--maybe just headaches and more pimples.

However, I have experienced long term side effects--red cheeks and stretch marks on my legs and arms. It's pretty ugly. I'm always achy now, not sure if that's from the Entocort but it could be.

At one point I was on 27mg/day (for two months) and with that high of a dose I experienced moodiness and slight moon face.

I think Entocort is worth a try, but it was hard to get off of it. I was only able to taper off of it (over 3 months) when I started Imuran.
I've considered Entocort my wonder drug.

Suffered for my whole life before being diagnosed.

Told to "Eat more fibre "



Currently on:

Salofalk
1500mg x 4/day
Entocort 6mg once a day Completely off as of 10/21/08. Took 2 years!
Imuran 150mg once a day

Post Edited (Asia) : 11/28/2008 5:19:36 PM (GMT-7)


kazygirl
Veteran Member


Date Joined Sep 2007
Total Posts : 955
   Posted 11/28/2008 7:47 PM (GMT -6)   
i was on entocort and it didnt help me at all.
i was in a super severe flare as well. very expensive and did nothing.
hopefully it will help you!
steph - 32 - female - gold coast australia - UC since 2000
severe UC in descending colon and sigmoid colon ONLY
mesalazine granules 3g x1 a day (much nicer than a million tablets a day)
prednisolone 25mg x1 a day (ick ick and did i say ick?)
enteric coated fish oil -omega 3 (so they get all the way to my colon)
vitamin D3 x1 a day
tumeric capsules - if i remember to take the bloody things.
i still eat what i want, when i want, if i feel like eating at all :(
 
 
 


robray
Regular Member


Date Joined Mar 2005
Total Posts : 130
   Posted 11/30/2008 12:31 AM (GMT -6)   
I have taken entocort enemas probably five or more times for a few months at a time in the past 10 years. I have taken prednisone once 15 years ago and again last year. Two months ago I was diagnosed with osteoporosis in my lower spine. I really don't think I have taken enough pred to cause osteoporosis so I feel it was probably the entocort enemas. I would at least say that entocort is not as innocent as I was led to believe. I would ask for a bone density scan before you start taking entocort. Then you will have a point of reference just in case.

Having said all that it did work quite well for me.
UC (Pancolitis) diagnosed in 1992. Medications: Dipentum, Pariet

Post Edited (robray) : 11/30/2008 9:24:44 PM (GMT-7)


Katmom
Veteran Member


Date Joined Mar 2008
Total Posts : 788
   Posted 11/30/2008 7:30 PM (GMT -6)   
Does anyone know if the Entocort has the same steroid amount as Cortifoam enemas? I might be underestimating the effect of the Cortifoam, if so.
It doesn't seem to be working, but them we have had a pretty tough case as well. Maybe her bones would be better off without it.
Daughter,15 diagnosed 1-08 w/ UC Learning from you all.
Asacol, Prevacid, Flagyl, Prednizone 50mg, major flare, now off!, Hosp. @ U of C, Comers, four x this yr. Low residue diet still, and still having problems.
6MP, Colazol ,horrible acne/moon for awhile- No more Pred,but 6mp isn't working. Remicade next up.
Trying probiotics, fish oil, and Mangosteen for kicks.
update:
On 2nd infusion of Remicade, and still on all of the other drugs., except Flagyl and Pred. Better, not healed.


SwollenColon
Regular Member


Date Joined Nov 2006
Total Posts : 133
   Posted 12/1/2008 12:11 AM (GMT -6)   
I'm using it now.....3-6mg/day and it's working fantastically. I was surprised it worked so well since all my problem is in the lower 12", but it does. I had a bone scan done last week and all is good there too, so I'm sticking with it.

Wiped Out
Regular Member


Date Joined Jun 2007
Total Posts : 71
   Posted 12/1/2008 12:13 AM (GMT -6)   
I was prescribed Entocort (3 daily) after a severe flare 3 or 4 years ago. It immediately brought me out of the flare but I soon I was back in the same shape, even worse. Gradual increase of the 6MP to the present dosage (150 mg daily) finally gave me a life back for now. This is the best I have been for years. It worries me that I continue to take all this medicine but maybe after the next colonoscopy in April the dosages will be reduced.
Left-sided UC Diagnosed 2004

Iron Deficiency Anemia Diagnosed 2007

Dec.2007 Colonoscopy -Active UC 45 cm.
Colazal - 4 X 3 daily
6 MP - 150 mg daily
Entocort - 3 daily
Canasa - As Needed
Nexium, Folic Acid












ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 12/5/2008 10:06 AM (GMT -6)   
I am currently trying entocort out (3 daily) after experiencing my first truly severe flare-up in about 20 years with colitis. Previously I have only used salfasalazine for maintenance purposes. Life has been good up until now.

I am approaching the end of my second week on it and can't say that it has helped. The only thing I can say for sure is that it has made me quite fatigued, and in general I feel lousy. I find it difficult to even walk without becoming exhausted (particularly difficult for me given that I have lived an active lifestyle - including jogging on a regular basis). In my case, I don't know if the treatment is to be preferred over the disease. I figure that if I don't see improvement in the next few days I will request to be taken off and try something else.

Anyway, it is certainly worth a try given the positive experience by others. Maybe it will kick in for me. In the meantime I am left reminiscing about the good old days (sigh).

ickypoo
Regular Member


Date Joined Dec 2008
Total Posts : 224
   Posted 12/12/2008 10:04 AM (GMT -6)   
As a follow-up, I am now off entocort after almost two full weeks at 3 pills/day. I reached a crisis point a few days ago with extreme abdominal pain and being semi-hallucinatory. Called the doctor and she immediately took me off entocort, scheduled a sigmoidoscopy for the following day, and prescribed prednisone (40 mg/day). Long story short, I am much better now. The entocort clearly did not work for me. In fact, I think it made my condition much worse.

As a sidebar: cleaning out your bowels while in a flare (in preparation for the sigmoid) is less than pleasant. If I never do that again, it will be too soon! On a positive side, once my colon was empty, I felt a lot better. Am thinking a liquid diet may be a good idea.
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