Longest Youve Been On Entocort?

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QueenCityCrohnie
New Member


Date Joined May 2010
Total Posts : 16
   Posted 6/12/2010 8:24 PM (GMT -7)   
My doctor prescribed me Entocort (3mg x 3) 2 months ago. At the time when I asked how long he thought I would be on it for, he told me maybe a year or longer. Didnt really think much of it then because I was still educating myself on Crohns. Now that I have read up, visited the Entocort website, it sounds like Entocort is more of a short term solution for a flare, and should only be taken a few months at a time. My doctor seems to be treating Entocort more like a maintenance drug, which doesnt line up with anything Ive read.

Has anyone here been on Entocort for a prolonged amount of time?

brit tuck
Regular Member


Date Joined Jun 2007
Total Posts : 143
   Posted 6/13/2010 12:18 AM (GMT -7)   
I was on it for about two years. Just make sure to keep an eye out on your bone density levels since prolonged steroid usage can really cause issues.

tewcute
Regular Member


Date Joined Mar 2010
Total Posts : 300
   Posted 6/13/2010 5:04 AM (GMT -7)   
My Gi told me I would be on it for months. From what I have read online it is typically used for 8 weeks at full dose and then can be used as maintenance ater that as a lower dose. I tried to taper mine unsucccessfully. My inflammation came roaring back so I am back on fill dose and have a call into the drs office to discuss meds.
Dx with crohns February 25, 2010. But suspect I had it since 2002 with very mild symptoms.
4 lialda a day.
3 entocort daily for the next few months
hyosamine for daytime
Bentyl for evening
Multigen


Irishmom4
Regular Member


Date Joined Sep 2008
Total Posts : 457
   Posted 6/13/2010 6:09 AM (GMT -7)   
I used it to get off prednisone while in a flare. I took it with Imuran until that kicked in and then I tapered off the Entocort very very slowly. All in all I was on it 8 months. My GI said it wasn't for maintenance.
Dx'd with Crohns 1984
Polycystic kidney disease in 1996
Bowel Resection surgery 2006, Now on Asacol,  Imuran, Folic acid, and Enalapril.
 


Writer
Regular Member


Date Joined Aug 2006
Total Posts : 443
   Posted 6/13/2010 6:34 AM (GMT -7)   
Based on fairly extensive clinical study data, it is not effective as a maintenance medication (just like prednisone, you become tolerant to the medication and stop responding). By the end of six months of use, it is not any more effective than a placebo. Generally the idea is to discontinue it after 12 weeks.

imissicecream
Regular Member


Date Joined Oct 2009
Total Posts : 157
   Posted 6/13/2010 8:23 AM (GMT -7)   
I was on 9mg for about 1 1/2 years. I would NEVER recommend that to someone. I'm now dealing with adrenal insufficency, horrible dark red stretch marks all over my body, and bone thinning. None of my doctors ever told me to taper- and since I was new to this all, I didn't know I had to.
18 year old female
Crohn's dx in May 2009, symptoms since October 2008
Off every med while the doctors contemplate my diagnosis.


mdf34
Veteran Member


Date Joined Feb 2010
Total Posts : 925
   Posted 6/13/2010 2:58 PM (GMT -7)   
Going on 5 months, I had a taper program in place at the end of 2 months.  My GI was using to help the original DX of UC, and it was helping.  When the pill cam results came back, the DX changed to CD and................well now I take pentasa and the entocort and cannot make my goal to start the taper......yet.
Diagnosed (FINALLY) UC Sept 09/Diagnosis amended 5-3-10 to Crohn's
Taking Pentasa 500mg/8x/day
Entocort 3X/day
Bentyl as needed
1000 mg Vitamin C
Prilosec 1X/day
Flonase
 
 


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8544
   Posted 6/13/2010 5:33 PM (GMT -7)   
6 weeks :p

With about 4 weeks left to go. So, no danger of being on Entocort for a prolonged amount of time here. I wouldn't want to be, to be honest. It may not be quite as bad as pred, but it's still a steroid.

grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 6/13/2010 6:32 PM (GMT -7)   
This is kinda freakin me out . . .have been on Endocort for 6 weeks, just filled a script for 3 months . . . yikes. Seems like there should be a full disclosure rule! (on 9 mg/day)
newby


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 6/14/2010 9:42 AM (GMT -7)   

I was on it over a year but I do recall reading something that it does lose it's effectiveness after a short period of time.

 

i was weaned off the stuff about 8 months ago. Guess what I'm back on it. Fun! I don't know if it's regained it's effectiveness but I've got other issues going on as well. Who knows.


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 6/14/2010 2:37 PM (GMT -7)   
Son was on it for a few weeks and then it took a few months to taper off of it.
It was used on him whilst he switched from enteral nutrition to 'normal' food and to tide him over until azathioprine kicked in.

jsk218
Regular Member


Date Joined Jan 2009
Total Posts : 29
   Posted 6/14/2010 3:52 PM (GMT -7)   
I was on it I think for 2 years. Would have been happy to stay on it even longer, but the docs thought it would be better to get off the steroids....
Diagnosed with Crohn’s Disease in Jan 2007, though sick since mid 90’s. Currently on Humira and Protonix. Have had success with Entocort and Cipro; negative experience with Methotrexate.


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 6/14/2010 11:26 PM (GMT -7)   
The protocol per the manufacturer is up to 8 weeks, at 9mg daily, to achieve remission. Presumably, if you haven't achieved remission by then, it's time to move on.
 
And then, assuming remission is achieved, take Entocort for another 12 weeks at 6 mg daily, which significantly extends the chances of longer term remission - this is why Entocort IS approved by the FDA as a maintenance med at 6 mg for three months.  
 
However, my daughter was on Entocort for years - 9 mg for eight weeks, then two mg daily for another 12 weeks, then one pill a day with no apparent side effects. When she tried to go off Entocort the first time, she landed in the hospital. We were very thankful for Entocort because combined with diet, she seemed to have her disease in check. But was the disease really brought to a dead stop (my personal definition of remission)? No. The colonoscopy confirmed that, despite her lack of symptoms, Crohn's was still festering - which meant the 3 mg of Entocort might have been helping but was not enough to finish the job.
 
I've seen no evidence that colonoscopies have ever confirmed "remissions" induced by Entocort. Without a colonoscopy, it is hard to tell whether a patient is truly in remission. Especially one like my daughter. With all the clinical trials that have been done with Entocort, am finding it downright suspicious that colonoscopies were never done to confirm "remissions." 
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 5000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 1000, 10mg zinc. SCD diet modified years ago to include potatoes and rice. 

Post Edited (njmom) : 6/15/2010 12:33:29 AM (GMT-6)


tsitodawg
Veteran Member


Date Joined Sep 2006
Total Posts : 845
   Posted 6/15/2010 12:29 AM (GMT -7)   
Why has your doctor not put you on a maintenance medication like Remicade, humira, 6mp, methotrexate, cimzia, asacol,or pentasa?If your disease is mild, most doctors will atleast put you on asacol or pentasa because they are lower level meds. I was on entocort and prednisone for nearly a year and it hurt my body severly. I am a barely 30 year old man with osteoporosis and teeth problems that I did not have before. After I was on Prednisone for about 8 months I ended up having 6 rootcanals, multiple cavities, and a tooth extraction with jaw surgery. It was terrible and my jaw is still not the same over a year later. Entorcort is still a steroid and it will have an effect after long term use. I am not trying to frighten you because these steroids due have a proper use and need but I would ask your doctor why you can not get started on an actual maintenance med.
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