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Crohn's Disease Forum » Treatment » How long should you take Entocort


07-07-2011, 12:27 PM   #1
Alice3
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How long should you take Entocort

Hi everyone. I've been in a terrible flare for about a month now and finally gave in and went to the doctor who wants to put me on Entocort. This will be the first time I've taken Entocort, so if anyone wants to share any experiences with me, that would be great.

However, my primary question is how long should you and how long can you take Entocort? Is it one of those drugs you can stay on forever or do you want to wean off of it as fast as you can like Prednisone?
07-07-2011, 04:28 PM   #2
Astra
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Hiya Alice

I've been on Entocort, and in order for it to work effectively you need to take it for 8 weeks at 9mg, then 6 weeks at 6mg, then 4 weeks at 3mg.
You can then take it for 3 months at 3mg to maintain.
Entocort is a steroid but is non systemic which means it only goes to the point of inflammation in the small bowel and the beginning of the large, and doesn't enter the system like Prednisolone. It's still a good idea to taper like I've mentioned above.
It's still a steroid so don't mess about with it!
The side effects are quite minimal compared to Pred too.
good luck, hope it works for you, always works for me!
Joan xxxx
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07-07-2011, 06:32 PM   #3
raechel
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I don't know how long is advisable to be on Entocort, but I took it at the same dosage as mentioned above by Astra. My doc ket me on it at one point for a year srtaight at 3mg. I have been off and on it for 3 years.
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Diagnosed 2007, 1 resection in dec 2010 (12 inches of illeum and cecum), several abcesses.

Meds I've tried:Stelara, Pentasa, Entocort, Prednisone (over and over again) Remicade, Humira, Flagyl, 6MP, Imuran, Methotrexate.. I'm sure there's more I can't think of...
07-07-2011, 07:46 PM   #4
Jennifer
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in order for it to work effectively you need to take it for 8 weeks at 9mg, then 6 weeks at 6mg, then 4 weeks at 3mg.
Does it not also go by weight just like Prednisone? Seems odd that everyone would be given the same dosage. :/
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Diagnosis: Crohn's in 1991 at age 9
Surgeries: 1 Small Bowel Resection in 1999; Central IV in 1991-92
Meds for CD: 6MP 50mg
Things I take: Tenormin 25mg (PVCs and Tachycardia), Junel, Tylenol 3, Omeprazole 20mg 2/day, Klonopin 1mg 2/day (anxiety), Restoril 15mg (insomnia), Claritin 20mg
Currently in: REMISSION Thought it was a flare but it's just scar tissue from my resection. Dealing with a stricture. Remission from my resection, 17 years and counting.
07-08-2011, 02:52 PM   #5
kllyeve
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I also just started Entocort - 9mg per day after having a colonoscopy on Thurs. The docs exact words were Stop the Pentasa today - start the Entocort right away. Hmmm so the pain and soreness wasn't all in my head despite my CR protein and ESR being normal!!!
07-08-2011, 03:05 PM   #6
Astra
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Does it not also go by weight just like Prednisone? Seems odd that everyone would be given the same dosage. :/
Apparantly not Crabby, seems like everyone starts on this dosage, then tapers, according to their website.
07-09-2011, 04:16 AM   #7
xoxava
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I tried entocort and it did nothing for me. However I was on pred for about 9 months. Started at 80mg for the first 5 the began to drop down. It's good at what it does but side effects sucked. I noticed less side effects on entocort.
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07-09-2011, 06:50 PM   #8
Miss Underestimated
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I'm in my 5th month of Entocort @ 9mg a day. My GI doc said he wanted me to take it for at least 6 months - I'll see him in August. I don't think the dosage is the same for everyone. The side effects are minimal - I've had to increase my BP medicine, and I get edgy and nervous sometimes, but overall it isn't that bad.
07-12-2011, 09:01 PM   #9
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My husband has been on Entocort for roughly two years now, and his GI wants him to continue as long as it's working. He just went in for his yearly check and the doctor said the more he reads and hears about Entocort, the more he thinks it's best for a patient to stay on it.

At first my husband took 9 mg per day for several months, because this was right after he was diagnosed with Crohn's so it took awhile to get him stabilized. Since then he's been at 6 mg per day.

He never had to be on Prednisone so I can't compare the two, but he doesn't really seem to have side effects from Entocort except that he does seem more short-tempered than he used to be. I can't say if that's the medicine or just dealing with Crohn's that causes it. He's more irritable these days, and he didn't used to be that way... although if I had to deal with Crohn's I'm sure I'd be worse.

Has anybody else noticed that with Entocort?
07-13-2011, 09:16 AM   #10
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I have never heard of anyone being on Entocort for 2 years. My daughter was put on it in FEb.. and in June he already started tapering her down to 2 pills now a day instead of 3; and that's for 2 months; then he will give her 1 a day for 2 months. I asked him why she couldnt' stay on it for longer b/c it seems she is much better now she had this and he said you dont want to stay on that for a long period?? she took that with cipro and flaxg.
if you husband hasn't tried supplements; I suggest he does. My daughter is doing really well; she has been on Boswellia for about a month and Omega 3 for about 4 months and OPC 3 from Marketamerica and Isotonix multivitamin for about 4 months. she is gaining weight back and doing much better.
07-13-2011, 09:56 AM   #11
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That concerns me M2M because everyone I've heard of being on Entocort only stays on it for a short time. Of course, come to think of it, I don't know of anyone 'in person' being on Entocort, just what I've read online and in this forum.

ETA: I'm glad to hear your daughter is doing so well. The only supplement my husband takes is aloe vera juice and vitamins, and that's when we remember it. I'll look into the supplements you mentioned, but have to be careful not to be pushy about it. (I'm very open to alternatives... DH is not.)
07-13-2011, 10:04 AM   #12
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Well I think that is b/c entocort is a drug used mostly for crohn's disease.. so from what I have read and heard; it is a lighter steroid that predis which is why it doesn't work for everyone. My daughters doc said he believes starting with the lighter stuff.. and if it doesn't work .. stepping it up to predis.. so in that way .. its a good thing that your husband is getting results from entocort. it does go right to the inflammation and doesn't damage liver; pancreas and other body parts on the way.. at least that is how it was explained to me. I would just make sure your husband sees his doctor regularly and gets blood work to make sure all his other levels are good. I have read on this forum that some people have been on entocort for a year and a bit more.. so it has been done.
07-13-2011, 01:53 PM   #13
lola99
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I've been on entocort for months now im guessing atleast 3-4 now. My doctor had me take it while weaning off prednisone to prevent my symptoms from coming back. I have mild crohns but yet i had to get back on prednisone after weaning from 20 down to 10mg. But after I got cushings my doctor had me wean agian and i didn't get symptoms as bad. But now im taking entocort and imuran and asacol. I still have the occasional horrible stomach cramp. I dont see how i have such mild crohns but my meds don't seem to want to work. I have been taking entocort at 9mg for the whole time ive been on it.
07-25-2011, 10:21 AM   #14
LS25
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Interesting stuff! I was on entecort at 9mg for 1 month then dropped to 6mg around the time I think I had a flare up and had to go back up to 9mg and when I went back to consultant after those 3 months he said it wasn't working for me as I was feeling worse so we went to prednisolone - wondering now should I have been on 9mg for 2 months, then 6mg for 2 and 3mg for 2 and givien that a bigger try. Also on pentasa at 2g twice a day. Side effects on entecort are minimal, can't even remember any - pred is so much harsher on the system. My GI says it's a much newer type steroid and just easier on the system so obviously better to be on than pred but then again it doesn't work for everyone . This is all so confusing!
07-27-2011, 09:09 AM   #15
Jessica
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I was on 9mg of Entocort (varied down to 6mg) for almost 3 yrs straight! Well, besides a few times on Prednisone when the Entocort wouldn't do the trick.

It turned me into this mood swing bitch! I was usually always irritable, pissed off and depressed. Every ones in awhile when my boyfriend could drag me out of the house, I would have my happy swings.

I had a skin biopsy which didn't heal correctly. I now have a crator on my back hip.

However - Now going to my Endocrinologist, my adrenal glads are up and functioning. Good to know I can make my own cortisol after such a long break!
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08-02-2011, 09:20 PM   #16
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My son has been on 9 mg of Entocort for 16 months. His doctor has tried twice to wean him down to 6 mg, but his pain always starts coming back. The last time he tried was a few weeks ago. He made it for about 3 weeks before he had to go back to 9 mg with an added 60 mg of Prednisone. I'm just praying that his pain gets better so we can get rid of at least the Prednisone!
08-03-2011, 07:04 AM   #17
Jessica
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@bandbmom - Whenever I was put on Prednisone while on Entocort, the doc told me to stop the Entocort. They're both steroids. If he's taking both of them and still not feeling better, I'd lean to the side of steroids not working for him. Maybe he needs to try something else. I would definitely ask around here to see if anyone's taken them both at the same time. Kinda concerned about that one.
08-03-2011, 06:31 PM   #18
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Thanks. We are going to see the doctor next week. Hopefully we'll get some answers then. He is feeling better today - finally!
08-03-2011, 09:41 PM   #19
jewels81
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I was on 9mg for 5 months, 6mg 2 months, just dropped down to 3mg for the next two months.
08-03-2011, 10:44 PM   #20
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I'm curious to hear from real people what the side effects are. For some reason, whatever weird side effect may be, I'll be the 1% to get it. I would really like to prepare myself for what's to come.
08-04-2011, 12:11 AM   #21
lola99
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I'm curious to hear from real people what the side effects are. For some reason, whatever weird side effect may be, I'll be the 1% to get it. I would really like to prepare myself for what's to come.
The side effects of entocort are pretty tame compared to prednisone. Since I got off the prednisone I've had no symptoms related to my entocort use. I got cushings from prednisone. My gi said i was "sensitive" to it. I only took it for 2-3 months at 20mg.
09-01-2011, 11:37 AM   #22
karlyg
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Hi all,
I have been on 9 mg of Entocort for over 3 years now. It is SO frustrating, because I have tried to taper down about 7 or 8 times, and every time the pain gets way worse or I end up in the hospital with a true flare. Every time I talk to my GI about wanting to get off of it, because I have always heard it is not meant to be a long term maintenance drug, he says he promises I will eventually get off of it, but not right now because my symptoms are relatively under control. I've gained a lot of weight during this period of being on Entocort as well, which is an unfortunate side effect, among others. I would LOVE to get off of the Entocort, but I feel like I am stuck now that I've been on it so long. I have tried the slowest tapers ever (3 pills two days, then 2 pills one day, then down to 3 pills one day and 2 pills one day, etc.), but it seems whenever I get down to 2 pills for a while, or try to go down lower, I get sick. Anyone else had any similar experiences? Thanks!!!
09-01-2011, 01:46 PM   #23
Jessica
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I was on 9mg of Entocort (varied down to 6mg) for almost 3 yrs straight! Keep your spirits up. I magically got better once I scheduled an apt for Mayo Clinic to be able to put on something higher up the chain. Body has bad memories of that place I guess. lol
09-01-2011, 02:11 PM   #24
Jennifer
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I'm currently on Entocort and my GI told me that it can be used as a maintenance drug (long term/forever) and that you can up the dose past 9mg depending on the severity of the disease.
09-01-2011, 04:47 PM   #25
Leanie
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Hey, i hope the entocord works for you as it is a popular treatment, my doctor finds it works very well to manage chrons. I was not lucky on it though and had to quite it after a month due to side effects that saw me rushing to the emergency room in the middle of the night.
Good luck!
09-01-2011, 05:56 PM   #26
karlyg
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Thanks for your responses about long term use of Entocort. It is comforting to know that other people have used it that way, and that it isn't the end of the world if I do have to keep taking it. Have a good day!
08-17-2017, 12:25 PM   #27
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I've been on Entocort for two months and it hasn't made any difference (neither did Prednesone). I started Humira last week and my GI said to stay on the Entocort until my follow up. From what I'm seeing, it doesn't sound like long term use is a significant issue (as with Pred) but that you wean off it when you go off. If it isnt helping me, why would I need to wean? What kind of side effects might I experience? Any thoughts on me staying on it to reduce inflammation, even if it isn't helping my symptoms?
08-18-2017, 01:01 PM   #28
teeny5
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I also just started Entocort - 9mg per day after having a colonoscopy on Thurs. The docs exact words were Stop the Pentasa today - start the Entocort right away. Hmmm so the pain and soreness wasn't all in my head despite my CR protein and ESR being normal!!!
Sounds similar to me! Went to urgent care and the on call gastroenterologist said the same thing to me!

Entocort has worked great for me in the past, no issues or side effects! My dr doesn't like to keep me on it for more than a few months. Long term use of steroid drugs is not good. I just followed his dosage schedule.
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