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Entocort - help!

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Crohn's Disease
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Posted 3/3/2008 6:53 PM (GMT 0)
I was diagnosed with CD last July. I'm 26 years old and have never had a problem until now with my health!! :) My GI dr. put me on Asacol 400mg 3 pills, 3 times daily and prednisone at first to help everything. While it semi-helped, the diarrhea has NEVER gone away. It wakes me up in the morning. Once off the prednisone, all symptoms come back.

After a bout of vomiting/diarrhea, a CT Scan and a lower GI, my dr. finally decided it was time to still keep me on the Asacol (9 pills a day), plus try me out on Entocort instead of the prednisone.

I haven't had any of the bad side effects with prednisone *knock on wood*, but I'm nervous about the Entocort, being on it longer, gaining weight, acne, etc.

Can anyone give me any insight on the meds? Have you tried it? Is anyone else on Asacol too and is it working for them? I'm getting frustrated at constantly being sick!!
Posted 3/3/2008 8:05 PM (GMT 0)
misspriss,

I can't speak to the Asacol question but I have been on Entocort for 2 years now and have never had any weight gain or acne from it. Only side effects I've had with Entocort were mood swings and irritability when I was trying to taper off, and (to be honest) low libido. But Entocort has been a life saver for me, seriously. I am on Humira bi-weekly and daily 6mg of Entocort and feel better than I have in years, plus I only have the diarrhea now 2-3x a day instead of a dozen or more.

Good luck to you!

Posted 3/3/2008 8:47 PM (GMT 0)
Entocort is supposed to be more targeted to where you need the medication and it is supposed to get out of the body quicker than prednisone.
If anything, you should experience LESS side effects :)

I just started Entocort on Friday so I can't tell you any pros/cons from my experience.
Posted 3/3/2008 9:49 PM (GMT 0)
MCCleaver - low libido? yowza! haha my poor fiance has struggled through all of this with me, I used to be so .. excited to be in the bedroom, now, he's lucky if he gets time in the bedroom once or twice a month, b/c I'm just too tired or worn out from the bathroom trips! haha This is sooo not normal for me at 26 y/o!!
My real hope is that Entocort can make me feel better enough to want to be active again, in and out of the bedroom. Also, Crohn's isn't a very "sexy" disease. *sighs*

Thanks for replying!!!

Megera - looks like we're starting the Entocort together, we'll see how it goes! :) I start my dosage on Thursday.
Posted 3/4/2008 4:37 AM (GMT 0)
My GI put me on Entocort today, 2 pills a day.  I am going to wait until tomorrow to start. I hope it is only temporary. I am concerned about the side effects as well, but if I feel better......Kay

Posted 3/4/2008 5:41 AM (GMT 0)
When I was first diagnosed I was put on Asacol and Entocort and the combination helped me greatly. It put a stop to my D and helped with a lot of my pain...although it took a few days for it to start working. The only bad side effect was it did make my ankles and feet swell and gave me some pretty nasty leg cramps. They lasted maybe a week and then went away but it was well worth it to not have to run to the bathroom every hour! I weaned of Entocort after about 5 months and had NO problems at all!
Posted 3/5/2008 10:06 PM (GMT 0)
We love Entocort. Has keep my daughter in remission for about 20 months and counting...
Posted 3/5/2008 11:26 PM (GMT 0)
I was first treated with Asacol 6 pills 2x day along with Entocort and it helped with lessening the runs to the bathroom. I did not stay on the Entocort more than 2 months but stayed on Asacol for 2+ yrs. I had to go on Azulfidine and pred hi doses after my ankles blew up like a pregnant lady and I couldn't walk. I thankfully worked through that and got off the pred. Have any of you tried VSL3? It is a probiotic that really helps stop the diarrhea. I am getting ready to be switched to Humira. Hopefully it will stop some of the pain and bleeding.
Posted 3/6/2008 12:07 AM (GMT 0)
I started on my Entocort today. 3pills a day (plus I'm on Asacol 9 pills a day) So far, so good. D this morning (as usual.. and its always before I eat breakfast, like 3 or 4x). I haven't felt the need to go to the potty all afternoon AND I haven't had any abdominal pain.

getting ready to cook dinner, so we'll see how that responds with it. Hoping I'm going to love Entocort as much as NJMom! :)
Posted 3/6/2008 12:20 AM (GMT 0)
Hopefully it starts working 4 ya! I wonder if I have developed a tolerance 4 the Entocort. It's not working 4 me the way it did last time I had it almost 3 yrs ago. Its funny u should mention D in a.m. I get hit with it early a.m. and late night the worst. Do u have issues with losing blood too? That's been my latest thing. My 'tank' is running low 8)
Posted 3/6/2008 2:59 AM (GMT 0)
Mellie,
No problem losing blood, I sometimes have a little, but not enough to be alarmed about. My main thing right now is just trying to get the D under control. Sadly, before I got diagnosed with Crohn's I went to the bathroom like 3 times a week, haha, now its like my body is making up for lost time!! :) haha
Posted 3/7/2008 2:37 AM (GMT 0)
MissPriss,

I'm 25 and have been diagnosed with crohns now for about 11 years...I have been on asacol for all those years. I am now on 12 asacol a day and 2 entocort a day for the last year and have had no noticeable side effect whatsoever. Just feeling really good...I hope this drug works for you. Keep in mind it might take a month to notice the first positive results but stick with it. Really a great drug
Posted 3/7/2008 2:42 AM (GMT 0)
Misspriss,  I jokingly told my boyfriend that I was an unfortunate participant in the "Colitis Diet."  I would lose weight, but from the quick "evacuation" of all food that I ate.....I don't even remember what it was like to have "normal" BM's..i.e. 1 a day....When I am not flared, or bleeding mad I like to go running. You want a good laugh? Picture running a race and along the way seeing all those people lined up for the porta potties and praying that my cd/colitis doesn't act up...I would be knocking people outta the way to the pot in the box!!!  Thankfully, I have made it through 3 races with no "violent" crowd bashing to the porta pots.....hahaha  My friends worry about having the energy to finish a race,,I'm so used to working through the pain/tiredness/etc of te CD that I am more worried about a "bathroom oops" mid-stride,,,,8)
Posted 3/25/2008 3:12 AM (GMT 0)
I have just been recently diagnosed with Crohn's Disease and they started me on Entocort 3x a day and Lialda 1x a day. It has helped me feel better and also have a little more energy and has helped my abdominal pain. I just have had problems with crazy mood swings and irritability with it though. I was wondering if anyone else had problems with mood swings/irritability from either of these meds? Thank you.
allie
Posted 3/25/2008 4:19 PM (GMT 0)
Hi,
I'm on Entocort and Pentasa.
Entocort totally increased my appetite and I'm struggling with zits for the first time in my life (I'm 30) since I've been on it. I also experienced some blurred vision (that was fixed when I lowered my dose). But it did make me feel better almost immediately! So I stay on it, despite having frustrating acne breakouts.

Good Luck!
Posted 3/25/2008 5:12 PM (GMT 0)

I've been on Entocort for just over 3 months (3 pills/9mgs each morning), and am becoming increasingly agitated and irritable.  It's nothing like Prednisone where I literally cried from 10 days straight, but the agitation is becoming a bit of problem -- not enjoying much, snapping at people I love, brain spinning too much about minor issues.  I'm wondering if tapering to 6mg might soften this side effect.  Anyone else who is suffering from Entocort & irritability notice an improvement when reducing the dosage? 

 

(I've also noticed an increase in my appetite, which is okay for now)

 

Thanks friends!

Kelley

Posted 3/25/2008 5:33 PM (GMT 0)
I noticed that when I lowered my Entocort dosage from 9mg per day down to 6mg per day that the irritability and mood swings decreased quite a bit, but unless I go down to 3mg per day my libido is still on super low-drive. Luckily I'm single so the low libido isn't a huge problem right now, but it sure will be if when I start seeing someone.
Posted 5/8/2008 3:27 PM (GMT 0)
Entocort makes me very moody. I'm irratible at times, depressed, and uneasy. I hate htis drug.
Posted 10/8/2008 8:00 PM (GMT 0)
hi, my name is Kendall and i was diagnosed with CD about a month ago. I am currently on 6 pentasa a day as well as 3 enecort and 2 imuran. I feel so much better already and can eat somewhat normally :) The only problem is that the steroids are making me very very emotional and angry. is that normal? im only 17 and i hate that i end up crying about everything for no reason. I plan on lowering my dosage tomorow to see how it effects me. wish me luck! :)   

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