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Starting Entocort today....tips/what to expect?

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Crohn's Disease
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Posted 11/30/2010 10:36 PM (GMT 0)
My 17 yr old daughter was diagnosed with "mild Crohn's" in distal ileum last week.

She starts Entocort today.

When should she take it? What should she expect?

She is in school....will she have any issues tomorrow?

It sure is expensive. shocked

I hope it works. sad

Posted 11/30/2010 10:49 PM (GMT 0)
I took Entocort for about 3 months. I noticed improvement in my symptoms after about a week on it. Everything seemed to be improving until I decided that I could now eat salad - something I had not eaten in years. That was my undoing precipitating a huge flare. That caused the doctor to add prednisone along with the Entocort.

Most people do not notice any negative side effects from Entocort. A small minoirty do get some systemic steroid side effects.
Posted 11/30/2010 11:03 PM (GMT 0)
She should take it in the morning unless otherwise instructed by her GI before she eats with a large glass of water.

Avoid grapefruit juice.

Eating a high fat meal immediately after taking it will slow down the amount of time it takes to break it down so it is probably better to save that kind of meal for a different time of day.

It usually takes about 30 minutes to be absorbed.

Most likely immediate side effect is headache but the chances are low that she will get one.

Longer term side effects may include acne and other side effects common to steroids like increased hunger, easy bruising, "moon" face, moodiness.

It is likely to take a while for her Crohn's symptoms to improve - it's hard to say, this is very individual. Typically this drug is prescribed for 8 weeks at 9 mg and then tapered to 6 mg for up to 3 months and then tapered again to 3 mg for several weeks and then stopped.

The assumption is that symptoms will be controlled in most patients at the end of 8 weeks of treatment.
Posted Yesterday 12:09 AM (GMT 0)
I have been on entocort along with Lialda since April of this year. I call it my little miracle pill. It has made all the difference in the world to me with my symptoms.  I was diagnosed when I had my first prolonged flare. Until that point I had only had IBS like mild symptoms. The Dr started me on Lialda alone but I had been flaring for so long( 6 months) that it wasn't cutting it. I was prescribed a 6 day taper of prednizone but again once I was off it all my symptoms came back. Entocort began working for me within a week but I still had off and on issues mainly around 'that time of the month'. We tried tapering in June with no success and then I tried again in august which was successful. I am currently weaned to 2 pills a day and am about to taper to 1. There are a few important things to know:

1.) Although my dr was comfortable with this for longer use than a traditional steroid there can be side effects long term. Osteoporosis is one so talk to your dr about a calcium supplement. So far I have experienced no side effects whatsoever

2.) I was told to take mine in the morning for best results. I just take mine with my breakfast as I was told to take it with food. I was not told I had to drink with water as one other poster mentioned so I am not sure if my dr just forgot that but for me it has not hurt.

3.) As another poster said - do not drink grapefruit juice.

4.) try to take it at the same time every day. I make a point to eat breakfast at the same time whereas before during the week I might eat at 7:00 am but on the weekend not till 8:00am. This just keepts the med levels constant.

5.) most importantly remember that everyone reacts differently to medication.  I had weird issues while tapering in that for a week many symptoms came back and then just tapered off a week later. almost as if my body was adjusting to the change in dosage. Be patient. I know it is hard because your daughter is in pain but this disease cannot be treated overnight. At my lowest point back in february I thought I would never feel good again. But now I work out 5 days a week, I have a much larger array of foods to choose from and I smile again. Make sure you and your daughter have a good realtionship with your GI and their staff. People underestimate the power of being in with the front desk. tongue   Not all GIs are created equal and not even all are as proficient at treating this disease. Ask questions and if your doctor is good they won't mind answering them.

I hope your daughter gets to feeling better really soon.

Posted Yesterday 2:21 AM (GMT 0)
Here's hoping all symptoms will be gone and your daughter will feel great in just a few weeks! Entocort should be taken in the morning, with or without food. (My daughter took it with water when she first woke up.) There's every chance Entocort will eliminate all of your daughter's symptoms...this might take a few weeks. Meanwhile, she might experience some acne or constipation (yogurt helped my daughter's C).

Entocort, because it is an immunosuppresant, might make it easier for your daughter to be susceptible to viruses. Also, if she gets sick from a viral infection like the common cold, because her immune system is compromised, she might get sicker than somebody not on medication...also, the infection might turn into a bacterial infection, requiring a round of antibiotics to clear up.

Also, Entocort just slows down the progress of Crohn's. My daughter was on Entocort for years, with no symptoms, and along with diet it even got rid of her stricture, but because of the ongoing low level of inflammation in her small intestine, her ability to absorb B12 has deteriorated. 

Right now and for the next months, Entocort can, if it works well enough, buy your daughter time to investigate other meds and/or diet and decide what to do for the longer term.

Posted Yesterday 3:55 AM (GMT 0)
Thanks to all! :)
Posted Yesterday 6:20 AM (GMT 0)
I take the max dose, split into 2 parts, 2 pills first dose of meds for the day and 1 with the second.  I have developed a bit of a rash over the months (since March when I started) but doc is keeping me on until I reach my goals and then will taper.  Sometimes my thoughts race, but nothing like pred.

And a big OMG on the cost.  This crap with pentasa are banrupting me I swear.  I have the max co-pay with my insurance on these pills.  If I had to pay the $1100 price tag a month for these pills I would probably just suffer.  Man thats ridiculous.

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