Update: trying Entocort and a question

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Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/25/2008 9:07 AM (GMT -7)   
I finally managed to get an appt. with a doctor at the University of Chicago. Not my first choice, but I really wanted to see someone before my extended vacation next month so I took whatever was first available. Overall I was happy with him, he was very professional (a nice change from my current GI) and sounded experienced despite his relatively young age. Plan to keep him. Though in a year I will move and have to find a new doc, but at least for now I feel like I finally have someone trustworthy.
 
Since going off of exclusive EN my discomfort level has been generally mild but consistent. If I press down pretty hard where the TI is it feels tender so I know something is going on. I understand that living off the cans exclusively, forever, is not realistic and a half-and-half approach combining food and EN wasn't doing enough, though my bloodwork looks good.
 
The doc said what I am doing is OK, but thought I could feel better on Entocort. He also though it might help put off an obstruction/surgery, though I have not had any obstruction type symptoms it does sit in the back of my mind. I have inflammation and narrowing at the TI but no evidence of scarring/stricture thus far. He did not want to do a scope or SBFT for a while so it may be some time before I know if I have a real stricture.
 
It's been a year since my liver issues from a supposedly safe drug, and I know Entocort should not have liver complications. So even though I'm still a bit frightened, I'm going to do it. I plan on keeping up my regiment of supplements and still want to get at least 500-1000 calories/day from the cans. Hoping for no/few side-effects. I will fill the script tonight.
 
For anyone who takes/took Entocort, did you start at the 3-pill dose right away, or work up to it over a few days?
 
My insurance does not provide prescription coverage. What is the cost you pay? I was going to try to fill it at Sam's Club, hoping it might be a little cheaper there.
 
 


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E


Crohn's 4 ever
Regular Member


Date Joined May 2008
Total Posts : 207
   Posted 6/25/2008 9:32 AM (GMT -7)   
The GI is right, even though you may not feel narrowing doesnt mean it is not there, but to be safe Entocort is the way to go.  I don't know about anyone else, I took the 3 right away, there is virtually no side effects (none to me) it can be very effective and mild.  The cost's...well I have full coverage and I am not sure, but it is NOT cheap.  I think it was like $300.00 CA, but could be cheaper where you are.  MY insureance covered it 100% so no costs to me.  If you can afford it, it is the way to go.  Good luck hope it works for you!
Tough times don't last long, tough people do!


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 6/25/2008 10:01 AM (GMT -7)   
I also went directly to a 9mg dose (3 pills) and then went down to 2, then 1. As a matter of fact I am waiting for a new prescription for entocort, since I had been off it for a while. Dr. hoping to calm down inflammation they found after my recent surgery.

I don't recall any major side effects. As for price, I'm not really sure, since I only pay a co-pay amount for prescriptions.

Hope we both have luck with it.

Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/26/2008 8:32 AM (GMT -7)   
Thanks for the replies. The Entocort was a stunning $458 for a one-month supply.

The pharmacist agreed I should just take the full dose right away, did it this morning. So far OK aside from feeling strangely light-headed.
July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E


FitzyK23
Veteran Member


Date Joined May 2005
Total Posts : 4219
   Posted 6/26/2008 9:14 AM (GMT -7)   
Wow! I'm amazed that you were able to buy it! Did they look at your like you were crazy when you said that you were self pay? Try asking your doc for samples and seeing in the website has a patient assistance plan. I also started with three pills right away. I did have side effects though. But i'm a rare one.
26 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.


Illini
Regular Member


Date Joined Dec 2007
Total Posts : 298
   Posted 6/26/2008 9:29 AM (GMT -7)   
The pharmacist didn't look at me like I was crazy, more of a look of pity, and he at least offered the kind reassurance that patients only take it for about six to eight weeks. I can't be too mad because although I don't have prescription coverage, my insurance's out-of-pocket is pretty low. I do have a "discount" card given to me by the university but was told that it probably wouldn't do anything because Sam's Club sells brand name drugs at or below the national average cost.

We have savings so we can afford it, though the money was supposed to go towards a down payment. To add insult to injury, our dog had dental surgery yesterday so the day's total cost was beyond $1000. Getting sick is expensive, no matter who you are!

Still dizzy, but very thankful I'm not nauseaus. I don't mind the dizziness so much. It means my husband has to drive me everywhere!


July 2007 Drug-Induced Liver Injury
January 2008 Crohn's Ileitis
Currently trying...
Enteral Nutrition, Omega-3 (Flax Oil and Fish Oil), VSL#3, Vitamin E


potty pooper
Regular Member


Date Joined Dec 2006
Total Posts : 375
   Posted 6/26/2008 12:51 PM (GMT -7)   
So sorry you had such a large expense with the entocort.
Check with the company that makes it; you might be able to get a reduced rate, if you qualify.

Hope the entocort helps. I'm still waiting for my prescription to come in the mail.

Sending you hugs and good wishes.
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