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Ulcerative Colitis
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Posted 7/23/2008 3:17 PM (GMT 0)
Hi.  I had a question about Entocort and how it has worked for anyone using it for U.C.  I was diagnosed with the left-sided U.C. back in early '04, and none of the 5-asa type meds ever worked for me, and the only thing that does, is azathioprine and low dose prednisone(try to maintain at 5mg per day).  I can't really seem to totally ween myself off prednisone. I have not at this point notice any side effects at all from taking a dose that low, and feel pretty healthy for the most part.  However, my doc thinks I should get to the point where i'm not taking prednisone at all..no matter how low the dose.  I started looking up more possible meds on the web, and noticed Entocort talked about.  I talked to my doc, and he immediately dismissed it saying..no, that's for crohn's patients, and that won't even get to the areas you need.  But...being a new member to this group, I’m reading some of the postings, and I see some are using Entocort.  Do you all think I should challenge my doc?  Get a second opinion?  I'd love to take something with a little less potentially dangerous side effects than the preds.  I still often have those morning "events", but I feel fine during the day with the azathioprine and low dose preds, and my quality of life is as good as it could be with this disease, but wondering if those of you who are like me and cant' handle the 5-asa(mesalamine/sulfasalazine) drugs thought about Entocort, or had any ideas about other medications that might work.  Thanks for your time in reading this. 

Jon

Posted 7/23/2008 4:46 PM (GMT 0)

Hi Jon,

I went into a horrible flare last October (about two weeks before I was to be married). As vein as this sounds, I told my doctor that I refused to be put on Prednisone because it would make me gain weight and give me moon face (which was a definite no for my wedding day). He put me on Entocort and it helped sooooo much. I didn't experience any side effects that I could tell and after a week my doctor gave me the go ahead to get married and go on my honeymoon. I was on Entocort for about 3 months and was able to taper off completely. It was my miracle med. I would definitely talk with your doctor about this again. I have Ulcerative Colitis and my doctor put me on it so I don't see why it wouldn't be ok for you to try.

Good luck!

Maureen

Posted 7/23/2008 9:59 PM (GMT 0)
I have UC and my doctor prescribed Entocort (oral caps) as an alternative to pred.  Entocort has a far lower systemic effect.  It has helped but I have found that it does not necessarily reduce and eliminate inflammation at the end of the colon.  The "other" meds, I use cortifoam, may be needed to supplement the Entocort.  The good thing is that rectal meds are always topical and therefore localized rather than systemic, so even though it appears you are using twice the meds, the systemic effect is far, far less. 

Posted 7/23/2008 10:41 PM (GMT 0)
After being unable to get off Prednisone without flaring, I was on Entocort for about three years. By the end of the first year, I had tapered to one capsule daily. It did help my symptoms but never put me in remission.

The bad news is I ended up with osteoporosis and a really bad fracture, diabetes and avascular necrosis in my shoulder. It may not be absorbed as much as Pred, but it was absorbed enough to cause me major health problems. Be careful.
Posted 7/24/2008 12:07 AM (GMT 0)
I was diagnosed with UC last month, and after I finished my prednisone, my doctor prescribed 8 weeks of Entocort. He said it is nearly as effective as prednisone, without the side effects. It seems to generally be very helpful to alot of people with UC.
Posted 7/24/2008 2:21 PM (GMT 0)
Hi. Thanks for the replies. I have decided to try a new doctor. A co-worker of mine has a GI doc he recommended who i'm seeing tomorrow. I know that that i will probably only ever respond to the immuno-suppressants and continually trying to wean off prednisone, and hopefully this doctor will at least let me try stuff like entocort instead of immediately dismissing it saying it will not work for me. As far as the side effects, I guess i'll deal with those when/if they come. Thanks again for the advice.

Jon
Posted 7/24/2008 4:22 PM (GMT 0)
Hi Jon,

I have UC and have been having trouble tapering off of prednisone as well.  this is my fourth try, as soon as i go below 10mg i flare.   I was taking Asacol as well but it was actually making me worse.  My doctor then took me off the asacol, up'd my Pred back to 20 and put me on 9mg of Entocort and we are trying to taper using that.  I am about to taper down to 10mg this weekend on the pred and i am a bit nervous but so far i have been fine.  I am assuming from your name you live in VT?  Are you close to Dartmouth Hitchcock at all? i go to a wonderful doctor there if you need any recommendations.

Posted 7/24/2008 4:41 PM (GMT 0)
Hi Erin. The VT is actually for Virginia Tech. Proud '98 graduate :) I live in Northern Virginia. Go Hokies! sorry..i had to throw that in there. Thanks for your response. I feel better seeing that i'm not the only one who the usual mesalamine/sulfasalazine drugs don't work. In facts..puts me into one heck of a flare. I was really getting frustrated. Yep..i too was on asacol which of course had the same negative effects. Lialda was my last doctors' idea to try. At that point, i was on only 50mg Azathioprine(Imuran), and average between 5 and 10 mg preds per day and continually trying to wean off. The lialda put me in a flare where i'm now having to try to taper from 50 mg preds and at least get me back to where i was before..which was feeling pretty good. So far i'm lucky enough not to have any side effects from the Azathioprine or preds at that low dose, and I am hoping my new doctor is a little more open minded on other medications. Thanks again for the advice.

Jon
Posted 7/24/2008 6:01 PM (GMT 0)

Hey Jon,

Sorry about the VT misunderstanding :)  I hope your appointment with the new doctor goes well tomorrow.  My doctor told me that if the Entocort doesnt help me get off the pred this time he will put me on 6-MP and if that doesnt work then Remicade.  I am hoping i dont' have to go that route and that the Entocort will do it's thing.  Keep us posted on your visit tomorrow!

-Erin

Posted 7/25/2008 7:05 PM (GMT 0)
Hi Jon,

Entocort is my favorite drug EVER. I was diagnosed with UC around the same time as you. My initial doctor put me on asacol with a small supplementary dose of entocort, and I was well again within days. But since I was in college at the time, I returned to school and went under the care of a new doctor. When I next flared up, he put me on prednisone. The biggest mistake I ever made was not pressing to try entocort again first, but I was so darn sick that I didn't feel like arguing. I was on and off prednisone for the next couple of years. Every time I weaned myself off, I'd be back on again within months. My doctor went so far as to tell me that my UC was so intractable that I was a candidate for surgery! But somehow, it just didn't feel right to me that he was telling me this. I ended up switching doctors and mentioning offhand that entocort had once seemed to work for me. She put me on 9mg/day to handle a flare, and it worked instantly.

Perhaps I'm a special case--I know it is rare for someone with pancolitis to respond so well to entocort--but for me, it is a wonder drug. I gained about 40 pounds on prednisone. I was miserable and embarrassed about my body and my swollen face. Entocort actually works FASTER for me during a flare than prednisone did, and I have NO side effects at all. If your doctor is being dismissive, perhaps you should try someone new who is at least open to the possibility that entocort will solve your problems.

Oh, I'll add that, in addition to having no side effects, entocort is much easier to get off of than prednisone. I never have any ill effects from tapering (and I taper in much larger increments).
Posted 7/26/2008 5:19 AM (GMT 0)
I have UC and I've been on Entocort since the end of May this year. However, I was feeling better two weeks ago and I started tapering. I got down to one Entocort(3mg) pill a day and on the third day of that my flare was back, and oh my, it was baaaack.

Since a few days after that I was back up to 3 Entocorts a day, and it's working much slowly this time. I don't get it. The first time I took it I instantly felt better.

Overall, I like it. Nothing else has worked for me.
Posted 7/26/2008 5:59 AM (GMT 0)
i was on entocort for about 4 months last year and it is really expensive here in australia.
$213 a bottle (1 month)

and...
it did NOT work for me.
nothing changed while on it and i couldnt afford it anymore so we stopped it.
Posted 7/26/2008 9:40 PM (GMT 0)
Entocort worked miracles for me, it crushed my catastrophic liquid diarrhea last fall. I went on it again early this summer and it was less effective.
Posted 7/27/2008 2:31 AM (GMT 0)

ErinD said...

Hey Jon,

Sorry about the VT misunderstanding :)  I hope your appointment with the new doctor goes well tomorrow.  My doctor told me that if the Entocort doesnt help me get off the pred this time he will put me on 6-MP and if that doesnt work then Remicade.  I am hoping i dont' have to go that route and that the Entocort will do it's thing.  Keep us posted on your visit tomorrow!

-Erin

Erin,

I just wanted to let you know that Remicade is a much less scary drug than 6mp.  I've taken everything now and wish that I tried Remicade earlier...no side effects, but unfortunately, it didn't work for me.  I don't know why I was so hesitant to try it in the first place.  So many people I met in the Remicade office had such wonderful, life altering results.  It's painless and only takes about 2 hours every 8 weeks once you're on a regularly scheduled dose.  The first few infusions are more frequent though.  It seems to have given so many people their lives and freedom back. 

Posted 7/28/2008 7:30 PM (GMT 0)
Serothschild-

thank you for the info on Remicade...all these drugs that they have for us seem to have these Scary possible side effects, its mind-boggling!

I am now down to 10mg of prednisone along with the 9mg of Entocort and so far ok.  I have my worst problems once i get below 10mg of pred so next week will be the real test when he wants me to drop to 5.  I will definitely keep the Remicade in mind and i am glad to hear that it did not have side effects!

Posted 7/28/2008 11:00 PM (GMT 0)

Erin,

I have the same problems when I drop below 10 mgs prednisone, so I wish you the best and will be thinking of you!  I want to clarify something I said in my last post about remicade having no side effect...by that I meant that for me, I didn't experience any of the side effects that we're clearly warned about.  Best of luck!

ErinD said...
Serothschild-

thank you for the info on Remicade...all these drugs that they have for us seem to have these Scary possible side effects, its mind-boggling!

I am now down to 10mg of prednisone along with the 9mg of Entocort and so far ok.  I have my worst problems once i get below 10mg of pred so next week will be the real test when he wants me to drop to 5.  I will definitely keep the Remicade in mind and i am glad to hear that it did not have side effects!

Posted 7/29/2008 12:18 AM (GMT 0)
Mitzo,

Mine is less effective too. Even though I never completely stopped, I was just down to one a day for five days. Then back up to three, and it's still not working like it did before...
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