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Has Anyone Ever Taken Entocort EC?? I'm Scared

by Mia
(Queens, NY)

Hello,

I have wrote on here before when I was first diagnosed in November 2007. The GI doctor I have been seeing was horrible and my primary care doctor sent me to another GI specialist a couple of weeks ago. He did some blood work and a test to see if it was definatly crohns disease because the other GI doctor started to think it was celiac disease because I have no pain in my stomach (just constant loose stools for over 2 years now).

Anyway, I'm seeing a new GI doctor who is very nice and seems to be much better then the last one. He scheduled for me to have a colonoscopy on December 16th (even though I had One in the beginning of this year but I guess he wants to see for himself and he wants to do a biopsy). Well, he called me last friday to let me know my blood work came back and everything looked good but the test he did for crohn's was positive. He told me he wanted to start me on Entocort and called it in to the pharmacy. I went to pick it up but after reading the side effects I am so scared to take it. I have to see him next week so he can see how I am doing on it and I haven't started it yet.

Is there anyone out there that has taken this medication? If so what should I expect as far as side effects because I am really scared. The only medication I have had to take since I have been diagnosed was Asacol. He wants me to take 9 mg. a day (which is 3 pills in the morning).

Comments for
Has Anyone Ever Taken Entocort EC?? I'm Scared

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Jul 07, 2009
 Pipestone Minnesota
by: Heidi Gorter

I haven't had much luck with entocort been on it for three months. I am very moody. I had to go on a super low card diet and that has helped with my nausea. Yes it is scary taking this drug i'm with you on that. I've been trying to get into the mayo clinic but my insurance in not in the next work so I am on my third docotor coming up July 23. I have Chron's disease in my ileum and ileocecal valve when they diagnosed me my valve was so swollen it was alomost swollen shut. MY internal medicine doctor said not to go on it because i could have major complications. Also I am anemic severely for the third time in a year and half and have to get iron infusion. Being anemic is common i found out if you have Chron's disease. I wish I could get off this drug to becaue i been having worse sleeping problems and have horrible mood swings. Hope this helps. Heidi
Jul 01, 2009
 Addendum to
by: Anonymous

Turns out the fact that my teeth were getting discolored was actually from some sort of green slime on my tongue, not a lack of calcium. My naturopath thinks the green on my tongue is probably from an intestinal overgrowth. Nonetheless, I am happy to be off of Entocort now, as I was worried about my calcium levels--osteoporosis runs in my family.

Also, sagemedlab.com worked for me for a while, then I flared up again. I recommend Elaine Gottschall's specific carbohydrate diet instead. It should break the vicious cycle that is causing the food allergies in the first place in many cases. It's said to work for at least 75% of people. I'm on Pentasa right now and trying that diet. Some people who try it are able to get off their medication.
Apr 15, 2009
 Entocort & Calcium
by: Anonymous

Hi there,

I've been on Entocort for over a year. I've heard from several places that you are not supposed to be on it for more than 2 or 3 months, but my doctor did not seem concerned about that. I am thinking about asking him to put me back on Pentasa now, though, because my condition seems to be doing a lot better and I think I am having some side effects.

I don't have any immediate side effects, but it just wears down on you. You see, Entocort is also used to treat people who have TOO MUCH calcium in their blood or something, and it is consequently reducing the calcium in my blood. I mean, I drank tons of milk and had tons of calcium supplementation, and my calcium was still on the low side in my last blood test. I've gotten my first cavity ever while on this and now some of my teeth are starting to be discolored--and I don't drink coffee, tea, smoke, or anything like that. Maybe I didn't brush enough or ate too much sugar as far as the cavitybgoes, but I am just suspicious of using this drug over three months, as there is no reason my calcium should have been so low in my blood test. Plus, Entocort can affect your skin, and I have been having problems with acne on my chest. I had it before, but I am wondering if it is worse now because of Entocort.

So, in short, use Entocort if you need it! It's fine for a few months, but after that--get off it if you can! It has harmful side effects in the long run. And take lots and LOTS of calcium supplementation!

By the way, go to sagemedlab.com and look at their delayed food senstivities testing. I had that done and I think it is making me better to the point where I feel like maybe I can go off the corticosteroid and on to a less aggressive medication.
Jan 16, 2009
 Entocort
by: Mia

*UPDATE*

Well, I just started taking them (Entocort) yesturday (1-15-09) because I couldnt take feeling sick anymore. I don't know how long it supose to take before you notice side effects but this is my second day and so far I haven't noticed anything, Thank God. I just hope none develop as the days go on.

Do you know how long it will take before I will stop running to the bathroom? I have slowed down but still am going. I haven't had a normal bowel movement in over 2 years. I really hope this medication helps me without side effects. I am also on Asacol (but I've been on that for a while and it hasn't done anything to help me that I know of).
The only thing that I have noticed the last couple of days is a headache but that happened the day before I started the entocort but now it just won't go away. It could be from my blood pressure because when I went to my GYN doctor on Wed. (because I think I have a rectovaginal fistula) my blood pressure was 158/101. It's been up and down since I was pregnant with my almost 3 year old and I don't know why the doctors haven't put me on medication for it. They all just tell me to tell the next doctor. What happened to the good old days when it felt like doctors really seemed to care.
Jan 16, 2009
 entocort
by: tod

I have been on and off entocort numerous times. It is much milder than Prednisone or even Cortenemas and to date has produced no side effects except helping to keep my Crohn's under control!
Nov 23, 2008
 Thank You
by: Mia

I just wanted to thank the people who wrote me. It made me feel a little better about taking it :-). I just got really scared when I read the side effects and I don't want to pass out or anything (especially because I have small children in the house). I also was nervous that it would increase my anxiety because I suffer from anxiety and panic attacks. They always say that steroids will increase anxiety and depression. Well, I am going to do my best to start it tomorrow morning (monday). I will probably have to come back here to read what you wrote to me again to give me the boost to just go ahead and take them. If anyone would like to email me please feel free, sweetnakira@yahoo.com. Thank you so much and I really hope I take those pills tomorrow so I won't be scared to eat anymore because if I hear one more person tell me how much weight I lost I'm really going to get depressed. Oh, has anyone had problems sleeping at night?
-Mia
Nov 22, 2008
 entorcort
by: jo

hi plz dont be scared i had my entorcort for a month !before taking cause i was worried so start it and u feel better after a good week go 4 it hunni u will be fine keep me posted of ur progress u can email me !! wonderfulwyatt@yahoo.co.uk gd luck jo x
Nov 21, 2008
 Has Anyone Ever Taken Entocort EC?? I'm Scared
by: Anonymous

I did not used Entocort before, but Asacol and Metrotrexate that has more side effects. Your GI will not prescribe medications that will harm you. Entocort is a steroid that reduce the inflamation and it i not been taken up in your blood stream but work directly on your intestines and colon. You can continue with it, and it is safely.
Nov 20, 2008
 Entocort EC
by: Kim

Hey don't be scared. I was on Entocort for over six months. It was actually the only medicine that actually made me feel better. There were no side effects from it that I know of. The only reason that I am not still on it is because I now take Humira. Anyway, like I said "don't be scared." By the way, I was diagnosed in November 2007, too, after going through a colonoscopy. If you ever just want someone to talk to, email me anytime- shanawitt1204@msn.com.

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