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Crohn's Disease Forum » Treatment » Weaning off of Entocort?


11-18-2008, 04:19 PM   #1
karlyg
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Weaning off of Entocort?

Hi all,
I've been absent for a while, so I haven't been following the forums all that much. But, now I have a question for y'all, and I thought I'd stop back and give it a shot! I have been taking Pentasa for about 3 years and Entocort (9mg - 3 pills) for about a year and a half. I know that Entocort is not really meant to be a "maintenance" drug, and it worries me to have been on it so long. Also, I've experienced some side effects like shakiness and (too much) weight gain. My GI doc has been talking about weaning me off of the Entocort, but I've tried a couple of times (like take 2 instead of 3 per day, then down to 1, etc.), but each time I have tried, I've gotten so many withdrawal symptoms that I had to go back up to the maximum dose after about a week. Have any of you had any experience with this or any advice about weaning? Do I just have to go ridiculously slow - like every third day take two instead of three, then every other day, etc. til I am down to a low enough dose or none at all? Thanks for your help!
~Karly
11-18-2008, 04:32 PM   #2
soupdragon69
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Karly you have been on this for 3yrs and you think cutting it back every few days is the right way to go about it??

Think about how long it took to get into your system and also for it to have any beneficial impact.

Then take into account the withdrawal aspects like shakiness, exhaustion and possible muscle pains, flu like symptoms etc etc etc

Slowly slowly catchee monkey! lol In other words go VERY VERY slowly.

Should ask your GI about a proper weaning shedule too so you can be monitored for safety sake....

Keep in mind you could be talking weeks to months to drop back ok?
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11-18-2008, 07:36 PM   #3
teeny5
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I am going to my GI tomorrow. He talked last time about weaning me off Entocort. I let you know if and how he has me do that.

What are the withdrawal symptoms you are having?

When did your shakiness and weight gain begin?
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11-20-2008, 07:54 PM   #4
teeny5
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My GI dropped me to 2 pills a day. Today is the first day but ok so far. He said it is best to wean you off of them and that you shouldn't stay on any steroid for too long.
11-21-2008, 03:55 PM   #5
karlyg
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Hmmm...Well, I've been on 3 pills per day since May of 2007. That's about when the weight gain and shakiness started, so I am pretty sure those are the side effects of the Entocort I have been experiencing. When I went down to 2 per day, I got flu-like symptoms after a few days. This has happened two times. I don't go back to the GI until the end of December, but I am pretty sure I'll be starting the weaning process again (I really do want to wean off of it - I just also want to feel ok!). Please keep me posted on how you do with your weaning! Thanks.
11-21-2008, 11:07 PM   #6
soupdragon69
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As I said earlier weaning after longer term steroids of any kind takes time and probably for you should be over several weeks at least.

The symptoms you describe go hand in hand with withdrawal Karly hence the need to decrease slowly as its your body telling you it has been relying on them and needs time to adjust.

When you do wind back you are going to have to be patient and stick out the symptoms but also be aware that you may not be able to get off them OR may need an alternative med if everything flares again - sorry!

Keep us posted on how you get on in Dec and go armed with plenty of questions for your GI. Also make sure you have a backup plan in case you run into problems over the Xmas and New Year period before you leave them!!
11-21-2008, 11:15 PM   #7
teeny5
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Yesterday I felt fine. Today I have the worst case of sneezing, puffy eyes, and runny nose. Most likely allergies, but annoying for sure!
11-22-2008, 12:50 AM   #8
drew_wymore
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You have to wean off them slowly. I don't know the exact mechanism of entocort since I was on it for only a brief period, but if it's like prednisone then at a high enough dose it causes your adrenal gland to stop producing it's own and you have to go slow enough to signal the adrenal to start producing its own again.
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11-24-2008, 03:54 PM   #9
karlyg
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Thanks for your words of advice - I really appreciate it. I'll post again after I go see my GI doc at the end of December and see what he advises. Keep the updates coming, teeny, please! Wishing you well,
Karly
11-24-2008, 07:11 PM   #10
teeny5
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Still been pretty good so far. Just really tired lately. I feel like I am just waiting for an extreme bout of pain to come....keep your fingers crossed!
11-24-2008, 08:52 PM   #11
s.a.m.
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teeny5 are you being weened to one pill then none or just going from the 2 pills to none. I am coming off them as well, I am taking 2 pills for another week and then I am supposed to have zero. Is you doctor putting you on anything other drugs or are you already on something else?
11-24-2008, 09:34 PM   #12
teeny5
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I went from 3 pills a day to 2. Then I see him mid December and he said if I was still doing well he would take me off them entirely. I am already taking Azulfidine that I will stay on, it is the anti-inflammatory he has me on.
12-01-2008, 10:23 AM   #13
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I was on entocort and pentasa and then I came off the entocort (also 9mg) without weaning and have been sick ever since. For the past three months I've been anxious, depressed, nauseous, dizzy, weak, fatigued, it's been horrible. I thought it was the crohn's beating me down but then I missed a few doses of the Pentasa and felt better immediately. I stopped taking it altogether and I feel so much better. It's unbelievable. I'm on azathioprine (imuran) but that's it. I go back to the doc on Friday and I'll be curious to see what he says.
12-01-2008, 09:26 PM   #14
teeny5
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Feeling pretty good after a full week of being on 2 pills. Have noticed increased allergy episodes and seem to be exhausted all the time. No matter what I do or don't do I am still tired. Also, been having pain in the mornings and at night and the night sweats have started again. None of it is as bad as before though. We'll see!
12-01-2008, 10:03 PM   #15
karlyg
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Sounds like you have a great attitude, teeny. I'm having some problems now, and haven't even begun my weaning, so I need to call my GI doc tomorrow. . .oh joy!
12-02-2008, 01:01 PM   #16
teeny5
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Trying to have a great attitude...I am not always the most positive person, but I figure I should be to keep my stress down.

Hope your problems get better soon.
12-06-2008, 09:34 AM   #17
s.a.m.
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I have a question for those who came off Entocort...Ever since I stopped I have the Big D constantly, I've lost weight, and I've been told I have a possible fistula...I am now waiting for a call from my specialist to figure out what to do...what has been your experience coming off of this drug?
12-06-2008, 02:58 PM   #18
teeny5
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Seems like I am having to go to the bathroom more and more. No diarrhea yet. Haven't lost any weight...thankfully. Go to the GI Dec. 31st...I am sure he will totally take me off of it at that point.
12-09-2008, 12:29 PM   #19
karlyg
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I went to the GI last week, and he said I should start weaning very very slowly (as in 3 one day, then 2 the next, then 3 the next, etc.), beginning in a couple weeks when (hopefully) my current minor upswing in symptoms has calmed down a bit. I'm nervous, but also excited to have a few fewer pills to take and, hopefully, fewer side effects.
12-09-2008, 07:00 PM   #20
teeny5
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Good luck! Always nice when you can stop taking some of the pills.
01-10-2009, 09:27 PM   #21
teeny5
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I have been off the Entocort all together for a week. I have had pain every morning but still not bad. What I have noticed is that my allergies are really bad since being off of it. I mean really bad. Also we had a thread about skin bumps on here before. Well, since being off Entocort my little skin bumps have come back. It is like I have permanent goose bumps all over my arms. They don't itch and aren't really red, just raised little bumps. I have also had night sweats every night. I have gone from going to the bathroom once a day to twice a day and it is painful almost every time. No blood though and no diarrhea. My GI said I MUST keep taking all my other meds to keep the inflammation under control.

Oh, also for those who have asked about remission. He said I am in clinical remission since my inflammation is at a normal level, even though I am still having other symptoms. So, I guess he believes the symptoms may never totally stop. Totally sucky!

Good news is that looks like my Iron is finally helping my anemia.
03-02-2009, 03:47 PM   #22
s.a.m.
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teeny how long in total were you weaning off entocort? i came off it completely and relapsed and now i am back on it but want to wean slower (last time weaned for 2 wks) Wondering how slow I should take it this time.
04-24-2017, 12:44 PM   #23
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Hello, well I was on Entocort for around 8 years and recently came off (in 2 weeks, not slowly) and my stomach is fine but my feet feel like someone broke all the bones and wrapped them in cotton. Is this from the Entocort? Also got a fatty liver from the long term use

Last edited by gracekahn; 04-24-2017 at 12:45 PM. Reason: Typo
04-25-2017, 11:23 AM   #24
Justanothercp
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Hello, well I was on Entocort for around 8 years and recently came off (in 2 weeks, not slowly) and my stomach is fine but my feet feel like someone broke all the bones and wrapped them in cotton. Is this from the Entocort? Also got a fatty liver from the long term use
How were you able to come off??
04-25-2017, 04:16 PM   #25
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We increased my Azathioprine as we lessened my Entocort. I also have celiac, so I never know which is acting up. Rough month, I just wish I was sure about where the joint pain was coming from.
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