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Entocort--effectiveness for UC?
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Ulcerative Colitis
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wantstogetbetter
New Member
Joined : Nov 2008
Posts : 10
Posted Yesterday 3:20 AM (GMT 0)
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
Joined : Apr 2008
Posts : 55
Posted Yesterday 3:36 AM (GMT 0)
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
jujub
Elite Member
Joined : Mar 2003
Posts : 10424
Posted Yesterday 7:01 AM (GMT 0)
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.
Mitzo
Veteran Member
Joined : Dec 2007
Posts : 536
Posted Yesterday 12:16 PM (GMT 0)
Entocort worked for me before marvellously, but it doesn't get to the distal lower left side inflammation if taken orally.
wantstogetbetter
New Member
Joined : Nov 2008
Posts : 10
Posted Yesterday 5:57 PM (GMT 0)
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
Joined : Aug 2005
Posts : 188
Posted Today 12:13 AM (GMT 0)
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.
kazygirl
Veteran Member
Joined : Sep 2007
Posts : 955
Posted Today 12:47 AM (GMT 0)
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!
robray
Regular Member
Joined : Mar 2005
Posts : 130
Posted 11/30/2008 5:31 AM (GMT 0)
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.
Katmom
Veteran Member
Joined : Mar 2008
Posts : 1203
Posted 12/1/2008 12:30 AM (GMT 0)
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.
SwollenColon
Regular Member
Joined : Nov 2006
Posts : 190
Posted 12/1/2008 5:11 AM (GMT 0)
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
Joined : Jun 2007
Posts : 71
Posted 12/1/2008 5:13 AM (GMT 0)
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.
ickypoo
Regular Member
Joined : Dec 2008
Posts : 224
Posted 12/5/2008 3:06 PM (GMT 0)
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
Joined : Dec 2008
Posts : 224
Posted 12/12/2008 3:04 PM (GMT 0)
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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