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Regular Member

Date Joined Aug 2010
Total Posts : 77
   Posted 8/23/2010 4:43 PM (GMT -6)   
I am on 3mg entocort every other day.  I feel better, (I'm out of bed and the joint pain & stomach pain is less frequent.)  Still have major fatigue, major D, and periodic waves of stomach pain.  Stay home most of the time due to anxiety of where's the next toilet going to be...will I make it in time.  ya know.  Plus nobody around me (except for my sons) GETS it. 
Someone suggested 9mg every day, (sorry I am new and cannot find my first post, but thanks to all that welcomed me)  The reason I am only on 3 mg, is cost issue, and I'm only getting samples.  My insurance wont cover entocort and it is SPENDY.  It will only cover pred.....and I hate that stuff.  Well, I think I should take more entocort, then maybe I will do better?  I am losing weight still, I am 5'7' and only 94lbs.  down from 120lbs.  I feel like I am not absorbing any nutrients.  
I was wondering do I take 3   3mg. through out the day, or take 3 pills all at once in the morning.  Thoughts? 

Crohn's since '07
3mg Entocort

Regular Member

Date Joined Jun 2010
Total Posts : 34
   Posted 8/23/2010 4:55 PM (GMT -6)   
Hi Llama_gal! Love the name. I'm really glad to hear that the Entocort is helping you, although I'm sorry that you're still so symptomatic.

While a higher dose sounds like it could help, I'd be very wary of changing doses of meds without discussing it with a doctor first. So I really hope you've discussed this with someone qualified to dispense medical advise!

In answer to your question, though: when I was on 9 mg of Entocort, my GI and pharmacist told me to take all 3 pills at once in the morning with my first meal of the day.

Welcome to the board!

Female, 29 y/o, dx Crohn's in June 2010, but probably had it for 10 years prior
Tapering Entocort (on 6 mg, down from 9 mg), plus elemental iron and calcium/vitamin D supplements

Elite Member

Date Joined Sep 2005
Total Posts : 10404
   Posted 8/23/2010 5:17 PM (GMT -6)   
Would your insurance cover a stronger med to supplement the Entocort? I'm thinking of something like Imuran.

Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~

Regular Member

Date Joined Aug 2010
Total Posts : 77
   Posted 8/24/2010 2:51 AM (GMT 0)   
Thanks Gillian, Good to see you are getting to taper off of it. Its about the only steroid that doesn't give me all the bad side effects, I just think maybe taking more might get me out of this "stuck in neutral" position.

Ivy, I am not familiar with Imuran, I can ask. My insurance is pretty lame. Thanks for your input you two!
Crohn's since '03
3mg Entocort

Veteran Member

Date Joined Dec 2005
Total Posts : 1768
   Posted 8/23/2010 9:00 PM (GMT -6)   
I don't know if there are programs for Entocort, but you might try checking online for them. Maybe check the company the medicine is made by and give them a call. They might not have assistance, but it would be worth looking into.

I hope you start feeling better.

32 yr old female-dx with Crohn's in '97 after emergency resection and appendectomy, 2nd resection '05, Bilateral pulmonary emboli 10/09
Currently on Humira, Omeprazole, Effexor, Seroquel, Calcium, Vit D
Coumadin stopped 3/15/10!!!!

Regular Member

Date Joined Aug 2010
Total Posts : 77
   Posted 8/23/2010 11:49 PM (GMT -6)   
Thanks Becky, I will look into this, as it is the only steroid so far that helps & I just cannot see why so expensive compared to Pred. I do think I should be taking more than I am, so this is good idea.
Crohn's since '03
3mg Entocort

Veteran Member

Date Joined May 2010
Total Posts : 8375
   Posted 8/24/2010 9:57 AM (GMT -6)   
Entocort is expensive because it is specially formulated to only work in the bowel. Prednisone is cheap and effective and sends steroid throughout your whole body, thus the nasty side effects.

Are you following a low residue diet? Perhaps that would ease your discomfort, or maybe even a liquid diet to give your bowel a rest while you are healing. Entocort is not a drug that you'll be able to use for a very long time - it's usually something that people take for 6 months or so while they're getting onto a more appropriate long-term thing, whatever that is.
48 yrs old, IBD diagnosis in spring '01. Proctitis, gastritis, ileitis.
Currently taking Pentasa (6g/day), Sulfazine (1.5 g/day), Prevacid, vit. D (20K iu), flax seed oil (2 tsp/day), mesalamine enema as needed.

Veteran Member

Date Joined Apr 2005
Total Posts : 3763
   Posted 8/24/2010 11:22 AM (GMT -6)   
I agree with Ivy that you should probably be on something in addition to the Entocort. Imuran/6MP might be something to consider since it is available as a generic and should be much cheaper than one of the biologics or newer meds. It does however, take a few months to reach its full potential in your system so you would want to speak to your doctor soon. I'm not sure why your doctor doesn't already have you on something in conjuncture with the Entocort already? Crohn's is a chronic life long disease and will progress if left unchecked. You should always be on some sort of maintenance medication. It sounds like your doctor has you tapering with out a new medication in place and with out you stabilized.

CD 20 years officially, 30 unofficially. 3 resections '93, '95 '97
Managing with strict low residue diet, keeping symptoms to a minimum. All test show small amount of ulceration, still have occasional blockages. But still have a great time with my 2 daughters and husband!

Prednisone, 6MP,Prevacid, B12 shots, Bentyl, Xifaxan.....

Regular Member

Date Joined Aug 2006
Total Posts : 443
   Posted 8/24/2010 6:50 PM (GMT -6)   
6-MP is available as a generic, and it's very inexpensive. That might be a good maintenance medication to ask about.

Veteran Member

Date Joined Feb 2010
Total Posts : 925
   Posted 8/24/2010 8:04 PM (GMT -6)   
I am on 9mg/per day....take all at once.....I take it with my first meal of the day.
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

New Member

Date Joined Sep 2010
Total Posts : 6
   Posted 9/11/2010 12:03 AM (GMT -6)   
Hi Llama_gal! I'm sorry that you're having problems. I agree with the others on this thread- try seeing if the drug company can help you, and ask about alternative doses or medicines. :)
Having had severe Crohn's for years now, I understand about your anxiety about going out. I typically bring an extra change of clothes with me, as well as extra Immodium. I also try to plan my driving route so that there are rest stops or fast food places along the way. But just in case, I also carry tp along with me. Another thing I do that can help is to find out where the restrroms are in a store as soon as I get there- that way, if I get a sudden case od D, I don't waste precious time looking for a bathroom. When going to a restaurant I try to get seated as close to the bathroom as possible.
Hope that helps!
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