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Ulcerative Colitis
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Posted 5/1/2008 9:44 PM (GMT 0)
I went to the doctor today and he prescribed entocort.  Does anyone have any experience with this?  What did you think? 

I really don't want to take a steroid, but rowasa and lialda are doing nothing.  He thinks the inflammation is so bad right now that I have to try a steroid.

Thanks!

Posted 5/1/2008 10:07 PM (GMT 0)
I had a wonderful experience with Entocort, but give it a chance to work. It takes at least a month for it to start working.
Posted 5/1/2008 10:30 PM (GMT 0)
Never forget it's a steroid at heart, and not advisable for long-term use. Hopefully it will get you into remission and you can taper back off it.
Posted 5/1/2008 11:38 PM (GMT 0)
I've been on Entocort for 9 months. It hasn't cleared my flare and now I'm weaning and have been on 6MP for 5 weeks (still no signs of improvement). It's not really supposed to be used for that long but my doctor was trying to wait as long as we could before going on 6MP. After reading some people's descriptions of flares, mine doesn't sound that bad. I usually have 3-5 BMs with blood and mucus a day and usually don't have any pain except for gas. Entocort doesn't have as many harsh side effects as pred but I had a few things I noticed. When I am on 3 pills a day, I can't sleep without Tylenol pm. After a week or two of taking Tylenol pm and I get adjusted, then I could usually go to sleep without it. Thankfully it doesn't give you the moon face or constant urge to eat like pred. However I haven't been able to lose any weight while taking it. I have never had any trouble with my iron levels and never have weight loss during a flare. I did have withdrawal headaches when coming off and my GI gave me Lortab for those. Since I have been on it for so long I've also had a bone density scan and everything was fine there. No luck with it myself but I hope it works for you!!
Posted 5/1/2008 11:57 PM (GMT 0)
It works quickly for me(a day or two), but it only worked 20 days or so the first time, and now its starting not to work again for me after a few weeks. I've never had any side effects. Make sure you take it first thing in the morning. It is much better than pred.
Posted 5/2/2008 12:47 AM (GMT 0)
He said to continue w/ Lialda, but to stop Rowasa. Does this sound sensible to you? I have got to get out of this flare soon. It has been six weeks and I am going insane. I really need this to work right away. I didn't want to take steroids b/c of the side effects, but what other choice is there?

Why do you have to take it in the morning? Am I going to become addicted to this? I took steroids after a car accident last year, but only for about 10 days at a time and the package they came in already had them going from 6 pills a day to one. It was no big deal.

Mommy pooh - I don't think my flares are nearly as bad as others either. W/ this one I don't even really have D, mostly blood, mucus, horrible pain, gas, bloating, tenesmus, and fatigue. I guess I am lucky in that respect. The doctor told me today that I have inflammation throughout my colon, left side and rectum being the worst. I guess it boils down to the amount of inflammation, and mine must not be that bad.

Thanks for the help.
Posted 5/2/2008 1:21 AM (GMT 0)
I have used Entocort, and it did work for me.  It did take longer than Prednisone to kick in, though -- about two weeks or so.  I didn't have any withdrawal symptoms, but I am always careful to follow the taper instructions exactly.

Drs. always advise to take Prednisone and Entocort in the morning.  I asked the pharmacist about this once, and he said that it is because of the insomnia side effect, which is present in almost every patient.  The theory is that if you take it in the morning, you will experience less insomnia.  Aside from taking it in the morning, it is also important to take it at the same time every day.

I don't believe that steroids are addictive.  They are not like pain medication.  You have to taper usage because you have to wean your body so that it can begin producing its own cortisone again.  Prednisone and Entocort are corticosteroids, which means that they add the hormone cortisone to your body.  The longer you are on the steroid, the less cortisone your body makes.  As you taper the steroid, your body makes more cortisone.

Posted 5/2/2008 1:31 AM (GMT 0)
When I tried Entocort I was taking it in the evening and it kept me awake almost all night long. The second time I got it I was smart and took it in the mornings instead. It worked for me the first time but not the second.. I am trying Pred now... I think they just "sound" scary.. they are not really.. or at least not in my experience so far... also, I am not suppose to be on the Pred long term.. and I was only on Entocort for 2 week intervals.

Good Luck.
Posted 5/2/2008 10:16 PM (GMT 0)
I just was prescribed entecort and cortifoam try and control a flare i've been having for almost a month. they had originally put me on canasa at night to take in conjunction with my colazol 3x3 a day.  i am pregnant and just wondering if anyone was on these while pregnant?

Posted 5/3/2008 7:01 AM (GMT 0)
I'm taking entocort 3x a day, 3 pills each time (9/day) I've been on it for about a month now since I flared up real bad. I'm on it in concert with Lialda and Cortisol. Finally got the doc to proscribe prednisone again to try to control the flare b/c those meds just weren't cutting it. The steroid has helped but not that much. So about entocort... I didn't really notice any affects, positive or negative. No side affects. I might need to control my flare first before seeing any benefits.
Posted 5/3/2008 3:17 PM (GMT 0)
Are you taking 27 mg a day? That sounds really high to me. I'm on 9 mg a day. I just take 3 pills in the morning. I thought I was on the highest dose.
Posted 5/4/2008 3:49 AM (GMT 0)
Man o man i wish i didnt have flare up's as often as i do!!!.. Normally my flare ups last about 2 months at tops. I have had this flare up since JULY.. and it is MAY!!!.. my doctor put me on a high dose of prednisone (you should see my moon face.. and i hate it).. and now i am FINALLY!!! starting to feel better. and as of wed i was off of the pred but he started me on entocort. i am on it for 6 weeks atleast.. when i took it before i wasnt on it long so i didnt see anychanges. hopefully i stay being good and can stay away from what i call the devil (prednisone).

Posted 5/5/2008 12:41 PM (GMT 0)
I was on entocort in the fall and had a very good experience, it stopped D in its tracks and I felt great. Unfortunately, it failed to stop a flare of beeding and mucus which came as a result of antibiotics. It works for D for me. One of the side effects, interestingly, is a sense of wellbeing, which I had. You should not take it for long, they say, and in my case it had to stop and a flare began.
Posted 5/5/2008 3:59 PM (GMT 0)
my3suns...I think he should keep you on all the 5ASA meds and use the Entocort as a separate med to enhance or encourage healing inflammation.

or

Keep you on the Lialda and have you also on the Entocort and a steroid foam enema (still fairly low dosage).

But, to not completely take you off rectal meds.

He can always add if you don't improve...so that's still an option.

Not all people can take the 5ASA meds....your symptoms do sound only rectal...so things above must be calmer.

And in saying allll this....is the entocort he's prescribed rectal?...it does come in an enema. 


quincy

Posted 5/7/2008 5:46 AM (GMT 0)
I've been using Entocort for nearly 3 months now and it's working good. Started at 9mg daily, now at 6mg daily. I like it. My GI told me that since only about 1% of the medication is absorbed, it's alright for extended usage. I plan to stay on it as long as it's working.
Posted 5/7/2008 5:32 PM (GMT 0)

Swollencolon,

when you initially started taking the 9 mg a day, how long until you saw a dramatic change?  I've been on it for 5 days and have been feeling a little better, but I just want to get back out into the real world without fear of not being near a bathroom!  THanks!

Posted 5/7/2008 7:32 PM (GMT 0)
Swollen Colon, please be alert for signs of side effects. I was told the same thing, and ended up having really bad bone damage and three surgeries (so far) because of it. That may be true for most people, but not for all.
Posted 5/8/2008 3:20 PM (GMT 0)
JEG I was on prednisone when I started the Entocort, so I was already feeling pretty good. I stopped the prednisone almost 11 weeks ago and have been fine with the Entocort since then.

Judilyn, do you have conclusive proof that the Entocort was the sole cause of your bone problems?
Posted 5/8/2008 3:32 PM (GMT 0)

I'm starting to feel better and have been on entocort for 5 days.  I'm also using the cortifoam 2 x a day.  The urgency is still there and multiple times a day still, but it's not as bad.  The nausea is going away and the blood and mucus is much much less.  I can't wait until next week.  I'm hoping that these symptoms will have all subsided.  Thanks for all your help and advice. 

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