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Entocort EC capsules

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Ulcerative Colitis
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Posted 7/6/2008 6:21 PM (GMT 0)
Hello,

I saw my doctor on Thursday, and he prescribed Entocort EC capsules, 6/day for eight weeks. He said that budesonide does not have the same systemic side effects as prednisone (which I just got off of last Tuesday), but after reading the prescribing info., the side effects seem pretty similar. Not only that, but he seems to be giving me twice the dosage recommended for active Crohn's disease. I am especially concerned about my bones. Has anyone been on this, and are the side effects different than prednisone? Thanks!

(I'm going to pick up the prescription today.)

Posted 7/6/2008 7:09 PM (GMT 0)
I've been on it for 10 months. My max dose was 3 pills for a total of 9 mg. I too thought that was the max dose so you should check on that. I've been on either 3 or 2 pills during this LONG flare. My first flare in 2004 was ended very quickly with Pred. but I told my doctor that I just could not take pred. again. To sum it up..it made me too crazy. With Entocort I did not get the moon face. To me, my face is a little puffier now but it has been a very long time. With Pred. I had a HUGE face in 2 months. I have also not had the huge weight gain on Entocort compared to when I took Pred. However, I have not been able to lose any weight so I'm hoping to take off some weight when I get off of it. To me, the worst part of Entocort is that I can't go to sleep! Every time my GI would increase me to 3 pills again, it would take me a couple of weeks to get used to it again so I would take Tylenol PM for a week or so. After that I could usually go to sleep. I don't notice the sleeplessness as much on 2 pills. After being on it for so long, I've had the same battles with tapering as with Pred. I get bad withdrawal headaches every time we'd try to step down. Unfortunately, Entocort did not get my flare under control and I had to start 6MP which did not seem to get it under control either. I feel sure that 4 Lialda per day has made the huge difference and I've been doing great for the last 3 weeks and can't wait to give my GI the good news so I can wean off Entocort!! YAY!

I truly hope it helps you get better.
Posted 7/6/2008 8:07 PM (GMT 0)
I was on Entocort for a couple of years. The theory is that because it delivers the drug directly to the colon, less is absorbed and therefore it has less side effects. I also didn't get the weight gain and moon face. I did have the sleeping problems, crankiness, hair loss and skin problems, although a bit less than with Pred.

I also had severe bone loss and developed avascular necrosis in my shoulder, leading to a partial shoulder replacement. I'd recommend treating Entocort just like Pred, and staying on it for the shortest time possible.

I also thought 9 mg. was the maximum dosage, and this is what the web site also says. I'd double check the dosage with the doc if I were you.
Posted 7/6/2008 10:25 PM (GMT 0)
Thanks for the replies!

I just got back from the pharmacy. I am in fact going to be on 9 mg/day, though I swear he had originally written 3 pills twice a day. I will be on it for 8 weeks. I am not thrilled with the bone loss--I am taking CaltrateD 2x/day and having lots of dairy (it doesn' bother me). Keeping my fingers crossed.
Posted 8/21/2008 4:26 PM (GMT 0)
Hello! This is my first time posting on here so forgive me if I ramble.

I am currently taking entocort and LOVE it. I did not have any side effects whatsoever. My face might look a little puffy but overall I've never felt better! I was diagnosed in 2006 and after a round of Prenisone my doctor put me on Entocort (3 pills a day.) I eventually got myself down to one pill a day with wonderful results.

My problem now is they want to get me off that one pill and nothing seems to be working. I tried 6-MP and ended up in the hospital and I just tried Pentasa and that sent me into a flare. I just don't know what to do! My doctor said it wouldnt be the end of the world to stay on one a day. I feel like such a failure because I can't handle any other medicine besides the Entocort. My next resort are the infusions of remicade, humara etc...I just don't even want to go there.

Do you think it's safe to stay on just one 3mg pill of Entocort a day? Has anyone else been on it for an extended period of time?

Thanks!

____________________________________


Beth, 26--- Boca Raton Diagnosed with Crohns April 19, 2006

On 1 Entocort a day - trying other medicines with no success

Should really start taking vitamins.
Posted 8/21/2008 4:31 PM (GMT 0)
This is my second round on Entocort.  I was first put on it in January to try and get a flare under control but it didn't work very well.  My doctor took me off and put me on Prednisone to get the flare under control.  I am having a hard time tapering off the Prednisone (this is my 5th try at tapering, can't get below 10mg) and my doctor has now added 9mg of Entocort to try and get me at least off the pred.  The only side effects i had with the Entocort is a lot of leg pain, especially during the night which keeps me up.  Otherwise i do well on it (side effects wise), it just doesn't work for my UC.
Posted 8/25/2008 2:33 PM (GMT 0)

How long does it take for Entocort to leave your body?  I had a flare up about 3 months ago and I am weaning off of it.  Tomorrow will be my last day of it.  I have gain 13 lbs and am devastated. Any suggestions for losing the weight fast?  I have been exercising and going to the gym 2-3X per week but i just keep gaining weight. 

Posted 8/25/2008 2:56 PM (GMT 0)
Is entocort for UC, for chrons or for both?
Posted 8/25/2008 3:20 PM (GMT 0)
It is for Crohn's
Posted 8/25/2008 5:04 PM (GMT 0)
Entocort is marketed towards Crohn's but my doctor said there have been some cases where it has also benefited UC patients (depending on where their UC is located). I have been on it twice now...and it doesnt really work well for me (I have UC).
Posted 8/25/2008 6:37 PM (GMT 0)
I've tried Entocort a few times in the past and it has worked great for me and I have UC. I'm about to go on it again and possibly stay on it for a very long time because nothing else seems to be working to keep me in remission. I've gone into remission a few times before while on Entocort so I'm excited to be back on it even though it is another pill. I've never noticed any side effects from it either. I'm constantly gaining and losing weight since I've been diagnosed with UC so I can't really say if it was the Entocort that did it. For those of you who've gained weight have you considered that it's just because your body is healthier so therefore you're absorbing more of the food you eat and not going to the bathroom as much and that's why you're gaining weight? Perhaps that's not it but it's just a thought.

I do have have a question though, does anyone know if it's bad to be on Entocort for a long period of time? In the past I've only been on it for about 8 months but my doctor is thinking really long term for me this time...meaning like years.
Posted 8/25/2008 7:06 PM (GMT 0)
I think that as long as you take multi-vitamins and calcium supplements you will be fine. I was on Entocort when i was first diagnosed in 2003 for about 2 years. Unfortunately the long term side effect is weight gain since it is a steroid. Unfortunately I gained about 50lbs in one year. I lost the weight but just had to go back on it for 3 months and have gained 13lbs. I am hoping that I will be able to lose it quickly once I get off of it.
Posted 9/28/2008 11:25 AM (GMT 0)
Please read your drug information when you pick up your prescription. The maximum dose for Entocort is 9 mg. It is for Crohn's patients with UPPER GI involvement. It does not reach your colon. 2% goes into your bloodstream- that's it. Unless you are doing the enemas. It does seem to have fewer side effects, no moon face, less water weight gain. But I found, trouble sleeping, tired but wired. And the taper is worse than prednisone as far as I'm concerned. These constant headaches are as if they are taking you off prednisone too quickly. Nasty. And you get the flare back mildy too- but I'm riding it out because I want off this stuff. Never again. I'd rather have prednisone. By the way- I've had 2 prominent doctors tell me now that there is no reason to EVER put a patient on more than 40 mgs. of prednisone! There is no clinical benefit. I have been diagnosed for over 35 years with Crohn's but had it all my life and been to see more doctors and medical facilities than I ever wanted too. Seems like every other doctor wants to send you somewhere to confirm that you have it! I have been fortunate to find a great doctor again so I am resting easy. But please, read up on your treatments, if they aren't working, or the side effects are awful, please say something to your doctor. There are alternatives. When you have a chronic illness you need to be well informed. We go through enough discomfort already, we don't need medicine to add to it.
Posted 9/28/2008 12:48 PM (GMT 0)
These posts are interesting.  I am presently back on 40 mgm of prednisone.  My GI doctor NEVER gives me a higher dosage level and only keeps me at it for five days and then down to 30 mgm, etc.  I've been in this flare since April, hospitalized for ten days in May.  Cannot get off the prednisone.   Weened off for two weeks beginning of Aug...boom...another flare up.  Back on it, weened off two weeks ago and again....bleeding all over the place.

 

I wrote down Entocort, but reading these posts looks like it is used mostly for crohn's and I have ulcerative proctitis.  I never got the weight gain from the prednisone, usually lose weight, probably from pooping so much.  The only negative effects I have gotten from the pred (and these are bad enough) is increase in BP and osteoporosis.  Cannot take Fosamax so I just take the caltrate and multivitamin and this time a water pill in addition to my BP meds.

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