Entocort - for how long?

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ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 543
   Posted 11/3/2008 12:24 AM (GMT -6)   
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
Crohn's since 1988
3 resections


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 11/3/2008 1:28 AM (GMT -6)   
The clinical testing showed efficacy at 9 mg. I would suggest you do the full dose. Otherwise you may just be wasting a lot of money.
 
I think the general recommendation is to do 9 mg/day for 6-8 weeks, then taper to 6 mg for two or three weeks, then 3 mg for a few weeks. My GI said to stay on the full dose until I "felt normal"...I did 9 mg for 7 weeks then tapered very slowly. The side effects I noticed were (1) occasional heart palpitations and dizziness, (2) some irritability, (3) easy bruising, (4) much difficulty concentrating. I did not gain a lot of weight and it did not change my appetite.
 
I had to pay full price too, so I bought it at Sam's Club. I paid $458 for 90 pills.
 
 
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis

Currently trying...

Enteral Nutrition, Flax Oil, VSL#3, Folic Acid, Vitamin E


Ann Ireland
Veteran Member


Date Joined Apr 2006
Total Posts : 511
   Posted 11/3/2008 6:45 PM (GMT -6)   
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
Ann Ireland

Congenital Rubella Syndrome (CRS) Severely Deaf, Pes Cavus, scoliolis, Hiatus hernia, diverticular disease, neuromuscular disorder, movement disorder, recently dxed as drug induced 2008 Crohns Disease 1996,Hypothyroidism 1998, Raynauds 2006, Sjogrens 2008, Lupus 2008, Chronic Muscle Myopaythy 2008, spine in very, very bad way dx 2008
Irish, not an illness!

100mcg tyroxine, 10mg Cipramil, 3mg Entocort, 30mg Tamazipam, mystatin, sudocream, neurontin 600mg, acidopolis, Vitamin B complex, Coenzyme Q10, Vitamin B12 injection, Nexium 40mg, Fortijuice.


lil-momma
Regular Member


Date Joined Feb 2008
Total Posts : 132
   Posted 11/3/2008 7:34 PM (GMT -6)   
My daughter took entocort for 5 months or so but it didn't work for her. It was very expensive. I'm not sure if you know that Walgreens does offer a W card which gives a discount. I don't recall the cost of the card but the savings were definitely beneficial. You can also look into the manufacturer for assistance. We to paid out of pocket and did not qualify for any assistance. If this drug works for you the cost would be worth it but I do recall the Dr. saying it takes 3 months for full effects. I hope you find some relief! Best wishes!
32 yr old Dx w/UC in 2001 - some what controlled by diet. I take multi-vitamins & probiotics.
Mother to 16 yr old daughter dx w/CD 9/07- she had surgery for abscesses 11/07, ileocolectomy/resection 10/08. She is taking multi-vit, iron for anemia, probiotics, bentyl prn, prilosec 20mg-x2, 6 mp 50mg-x3


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 11/3/2008 7:52 PM (GMT -6)   
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.
27 Year old married female law student (last year!!). Diagnosed w/ CD 4 years ago, IBS for over 10 years before that, which was probably the CD. I am sort of lactose intollerant too but can handle anything cultured and do well w/ lactose pills and lactaid. For crohns I am currently on Pentasa 4 pills/4x day and hysociamine prn. I also have bad acid reflux and have been on PPI's since age 13. I have been through prilosec, prevacid, and nexium. Currently I am on Protonix in the morning and Zantac at night. I also take a birth control pill to allow some fun in my life.


ozonehole
Veteran Member


Date Joined Dec 2006
Total Posts : 543
   Posted 11/4/2008 12:41 AM (GMT -6)   
Thanks to everyone for all the helpful info.

Now here is something interesting. I did a Google search on Entocort, and hit upon a Canadian pharmacy web site:

http://www.canadamedicineshop.com

They price quote brand name Entocort for $225 for 90 pills, but they also show a generic for $58 for 100 3mg pills. Quite a saving. In the USA, I don't think there is a generic Entocort equivalent. It might be a bogus web site, or even if legitimate it might not be legal to import this stuff into the USA. But I am going to Taiwan soon, and it shouldn't be a problem there.

Anybody have any experience buying from a Canadian pharmacy over the Internet?

Again, thanks for all the info.

regards,
Robert
Crohn's since 1988
3 resections

Post Edited (ozonehole) : 11/3/2008 10:49:30 PM (GMT-7)


islandgirl
New Member


Date Joined Jul 2005
Total Posts : 5
   Posted 6/20/2009 5:51 PM (GMT -6)   
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
 

pix
Regular Member


Date Joined Mar 2008
Total Posts : 134
   Posted 6/20/2009 9:08 PM (GMT -6)   
Hi!  I have Crohn's and autoimmune hepatitis.  I take asacol (pentasa) for the Crohn's, but I need entocort for the hepatitis.  I took prednisone 40mg daily for one year and had all the side effects (it seemed..).  When I had to restart a steroid, my hepatologist started entocort instead.  This is a wonder ful medication, except for the price.  I take 9 mg, and there are no side effects at all.  Not one.  I am very grateful, because I hated prednisone, except for the hypomania.  :_O  It is so expensive, but luckily I have good insurance, so I just pay 30 dollars each month.
 
 

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 6/23/2009 2:58 PM (GMT -6)   
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.    

ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/23/2009 3:06 PM (GMT -6)   
I used it off and on for many years.  An expensive drug but it seemed to work  - for awhile.  This past year, it stopped working for me.  That's when I had to go on the evil drug Prednisone.  I wish you success.  It's a great drug when it works.

Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.
Current Medications:  Humera 40mg injections every other week, Imuran 150mg, Levsin, Welchol 625mg, Prednisone 10mg(started weaning off, now going back up in dosing).Canesa suppositories
Misc:  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.


Bluize
Veteran Member


Date Joined Mar 2005
Total Posts : 635
   Posted 6/24/2009 9:53 AM (GMT -6)   
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.


Susan
 
28 years with Crohns in the term ileum.  Feb 07 Resection.  Apriso, Align and possibly going back to Entocort.  Currently pregnant!


ISF13+
Regular Member


Date Joined Jun 2009
Total Posts : 202
   Posted 6/24/2009 3:05 PM (GMT -6)   
Wow, only $50. It costs me $100 with my insurance. I wish it still worked though. I would prefer to pay the $100 instead of being on this darn Prednisone ....... :(
Crohn's Disease. 
Diagnosed 13+ years ago. 
Been in remission for short periods of time but each time I come out of remission my disease seems to have spread.  No longer isolated in my ileum, now from stomach down to rectum.
Current Medications for the Crohns:  Humera 40mg injections every other week, Imuran 150mg, Levsin, Welchol 625mg, Prednisone 10mg(started weaning off, now going back up in dosing).Canesa suppositories, Calcium, Acidophilus & Potassium
Misc:  I recently joined a local crohns disease support group that meets monthly.  It has been great talking to and meeting other people who share the same disease.  I hope to continue gaining insight through this forum as well.


Scrapbooker Mom
New Member


Date Joined Aug 2010
Total Posts : 1
   Posted 8/10/2010 6:40 AM (GMT -6)   
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!

orngie
Regular Member


Date Joined Feb 2009
Total Posts : 161
   Posted 8/10/2010 7:33 AM (GMT -6)   
I was on 9mg from December 2008 to August 2009. I don't remember how long it took to taper off, but it wasnt bad at all.

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 8/10/2010 7:50 AM (GMT -6)   
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.  

Rider Fan
Veteran Member


Date Joined May 2008
Total Posts : 1434
   Posted 8/10/2010 9:09 AM (GMT -6)   
I do remember reading once that osteo is still a concern with Entocort.
33 y/o male. Dx'ed in 1999. No surgeries.

Current meds: Humira 2/27/09. Proferrin iron pills.

Reduced gluten and dairy.


Go Saskatchewan Roughriders!

njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1883
   Posted 8/10/2010 12:04 PM (GMT -6)   
True, over years of use, Entocort (budesonide) can cause the same osteo issues prednisone does.
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