Entocort - for how long?

Hi all.

I've been flaring for the past 3 weeks (mucho diarrhea), and finally decided I had to do something. So I visited the local Urgent Care Clinic and got the doctor to write a prescription for Entocort. He was not a GI doctor, but it was a weekend so I had to take what I could get.

This is my first time on Entocort, so I've got a couple of questions (it was no use asking the doc, since Crohn's wasn't his specialty and he said this was the first time he'd prescribed the drug).

Info on dosage and how long can you take this drug is what I really need to know.

According to this web site:

http://www.rxlist.com/entocort-drug.htm

==========BEGIN============
The recommended adult dosage for the treatment of mild to moderate active Crohn's disease involving the ileum and/or the ascending colon is 9 mg taken once daily in the morning for up to 8 weeks.

Repeated 8 week courses of ENTOCORT EC can be given for recurring episodes of active disease.

Following an 8 week course(s) of treatment for active disease and once the patients symptoms are controlled (CDAI <150), ENTOCORT EC 6 mg is recommended once daily for maintenance of clinical remission up to 3 months. If symptom control is still maintained at 3 months an attempt to taper to complete cessation is recommended. Continued treatment with ENTOCORT EC 6 mg for more than 3 months has not been shown to provide substantial clinical benefit.
==========END==========

Given how darn expensive this drug is (I'm paying for it myself), I'm trying to minimize the dose. Also, I had a very bad reaction to prednisone some years ago (glaucoma!), so I'm reluctant to overdo it with steroids. Right now I'm taking just one pill per day (which is 3 mg). I've only been on it for 2 days so far, but have noticed a slight improvement (reduction in diarrhea). So I'm wondering:

1) At such a low dose, am I doing myself any good, or should I take the plunge and go to 9 mg per day?

2) How long can you take this drug? I've heard some people on this board saying they've been o it for years, but the above-mentioned web site seems to indicate it doesn't do any good to go over 3 months.

3) Side-effects. Like I said, I got glaucoma from prednisone - that's serious, I could have gone blind. I don't have glaucoma now, but I wonder if others have experienced side-effects from Entocort. I understand that budesonide (the steroid in Entocort) is much safer than prednisone.

4) Price. Anybody know of bargain sources? I bought 60 pills for $350 from Walgreens (best deal I could find in the USA). I am going overseas soon to Taiwan, and MAYBE it will be cheaper there, but if anybody has a suggestion on a low-cost source, I'm all ears.

Thanks in advance for any and all information.

cheers,
Robert

I have been on Entocort 3mg daily more times on then off it since 2002! In the beginning was on it daily for 5yrs! I only come off it for short periods. At present on 9mg daily as in flare.
about year ago I asked to come off it. Prof. agreed, very difficult to control the crohns thereon afterwards.
Ann

I did a month at 9 mg a month at 6 and a month at 3 then some every other day then done. Def. start at 9 even if it is for a week.

ozonehole said...
Hi all.

I've been flaring for the past 3 weeks (mucho diarrhea), and finally decided I had to do something. So I visited the local Urgent Care Clinic and got the doctor to write a prescription for Entocort. He was not a GI doctor, but it was a weekend so I had to take what I could get.

This is my first time on Entocort, so I've got a couple of questions (it was no use asking the doc, since Crohn's wasn't his specialty and he said this was the first time he'd prescribed the drug).

Info on dosage and how long can you take this drug is what I really need to know.

According to this web site:

http://www.rxlist.com/entocort-drug.htm

Hi!  I have had great success with Entocort.  I've been on it for 5 years.  Two 3mg tabs per day. My specialist said Entocort is much safer than alot of the meds used to treat Crohns, especially Imuran (which I tried and it was hell), Humira and Remicade!!  Everyone is totally different, but for me Entocort has been a life saver.  I live in Canada and it is expensive, but less so than the US.  I pay $100 for 60 tabs (it has gone down in price).  I'm sure you would do better buying it online from Canada.

Good luck!

Carol

 

My daughter took 9 mg for 8 weeks, 6 mg for another 12 weeks. I agree you should do the full dosage to nip it in the bud.

And then, since about May of 2007 has been on 3 mg Entocort every day. Having a wonderful life and no symptoms or side effects. We know she is not in  full remission because the recent March 2009 colonoscopy did show a couple of spots where Crohn's is active in her TI.

She could up the dosage, but then is likely to be more susceptible to colds, etc. So instead, is planning to go on LDN and then slowly taper off that one last pill of Entocort.

THe only time she flared was when she tried to go off that one little pill.    

Currently on Entocort and Apriso.  I found out I was pregnant and with the anxiety of it and the fact that i had to get off the antibiotics I flared.  At that point I was only on Apriso so I called the doc and asked him to put me on Entocort.  It always gets me out of a flare.  I would recommend the full dose.  I think anything less than that is a waste.  I will be on it for 4 weeks and then see the gi doc again to be eval'd.  I have a feeling I will be on this for a while unless I go the biologic route.

It has helped me tremendously and have been on and off it for a few years.

One thing, it's not for those who have fistulizing disease.  It can promote it.  I would see a GI doc asap.

I pay $50 a month with my co-pay and I think that's outrageous so I don't blame you feeling pinched $$ wise.

Hi All,
New to the Forum... seems like a great place to share and get info. Diagnosed with Crohns after a small bowel obstruction in 2008, symptoms for many years prior but had the vague diagnosis of IBS. Started Entocort after a particulary bad flare, went off and on a few times. Entocort allowed me to feel normal again. Currently on (4 twice a day) Pentasa and trying to wean off of (2 per day) Entocort. It has been a week and not pretty. GI wanted me to try to go off it, but I do not think I can. Long term users: what tests, besides liver function, are you required to take while on Entocort? Is Osteoporosis the major concern for long term use?
Thanks!

I wasn't aware of any particular liver function tests required for Entocort, and my daughter's labs were Ok while on Entocort (except for low vit D and TSAT - but that is with or without Entocort).

But after she had been on Entocort, 6 mg, for more than six months, we did see an effect on her serum glucose, which had never been high before. It didn't ever get as high as it did while she was on prednisone, but it did get up to slightly higher than normal.

At one pill, serum glucose was OK.  

True, over years of use, Entocort (budesonide) can cause the same osteo issues prednisone does.