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hi...I'm new here..entocort worries

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Crohn's Disease
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Posted 12/5/2007 4:17 AM (GMT 0)
 hi....been reading these post for days, thought it was time to join...found out I had crohns since 2005. Been anemic since then too, I'm on Pentasa but doctor wants to put me on entocort, nervous about starting this.. had an allergic reaction to cortisone shot in my knee years ago, doctor said it should be okay.I take care of my mom who is confined to bed due to stokes. I'm worried about the side effects of the entocort.anyone can tell me what to expect.....
Posted 12/5/2007 4:21 AM (GMT 0)
about a week after I started entocort I started having awful leg,ankle, and foot pain. Also swelling in those areas. It was painful to even get out of bed and walk to the bathroom. It eventually went away but it was AWFUL while it was happening. It also makes me have to pee more. But that's about it. Overall the side effects were well worth the relief that the drug provided for me.
Posted 12/5/2007 4:23 AM (GMT 0)
i was on entocort for 6 weeks one of the first meds i was on. 9mg 2 weeks then 6 then 3. Overall it was good felt like superwoman had tons of energy and could do anything for hours.downside didn't sleep much when i did i got leg cramps which i later found out is a side effect. only other thing was a puffy face. Havent had much experience but thats my input. i am sure there are others on here to tho that will fill in any gaps.:)
Posted 12/5/2007 4:32 AM (GMT 0)
thanks....not looking foward to leg cramps, but I would love to have some more energy.
Posted 12/5/2007 5:37 AM (GMT 0)
way2tired

Honestly, I have been on ENTOCORT about 5 times since I have had Crohn's (not anymore or recently because I am on HUMIRA) and I never had any side effects. If anything, I had a little bit of a moon face but NOTHING compared to what happens to me when I am on Prednisone. I would give it a Shot! Just take a lot of calcium and keep track of side effects, etc. Entocort never worked for my Crohn's unfortunately BUT it does for many people. The effects are so much less than the Prednisone. Honestly, I think a lot of the horrible pains that we get (I get them everyday no matter what I am or am not on) are just our Crohn's. Not that that makes it better!

Let me know if you need anything else!

I would go for it!

~ Brittany
Posted 12/6/2007 12:47 AM (GMT 0)
Go for it!! My daughter has been on Entocort for more than a year...since May has maintained full remission (no symptoms) on just one pill a day.

When she was on the full dose of Entocort, the only side effect was slight constipation. Subsequently, after being on 9 mg Entocort for 8 weeks and 6 mg for 4-5 months, her blood sugar started to rise to the highest end of the normal range...however, when she tapered down to just one pill, the blood sugar returned to the 80s, which is good.
Posted 12/6/2007 2:46 AM (GMT 0)
I've been on Entocort on and off several times over the last two years. I've always felt best when I'm on Entocort. The only side effect I get is a mild increase in blood pressure. I would definitely try it.
Posted 12/6/2007 2:58 PM (GMT 0)

I've been on Entorcort 3 times over the past seven years and have never noticed any side affects.  I think prednisone worked much better for me in terms of stopping a flare quickly, but the side affects are awful.  I'd rather take Entorcort for 3-6 months and get over the flare slower than deal with the prednisone side affects.  

As Crohns drugs go, I consider Entorcort to be one step above the 5-ASA drugs, which are also well tolerated and have few, if any, long term side affects.  It's way safer than the 'harder' drugs, like Remicade, Humira, Imuran, 6-mp, etc....

Everyone is different, so none of us really knows how a new drug will affect us until we try it.   I hope it works for you.

Posted 12/6/2007 3:01 PM (GMT 0)
I feel great on Entocort. But that is me. I'm allergic to every other drug. I have found out that i also have Graves and cataracts from being on Entocort for so long. But i feel i can manage them and have surgury on my eyes and be done with it. I tried going off the entocort after i found out about the cataracts and started going into a flare. I put up with that for about a month and went back on entocort. But everybody is different. My sister has CD also and can not take it.
Posted 12/6/2007 9:02 PM (GMT 0)
I have been on Entocort since  may. it took a while to work for me. I started on predisone and my Doc switched me to entocort instead. good luck! Karen
Posted 12/7/2007 2:17 AM (GMT 0)

Wow, this is the thread I needed today.  I just got done having a huge series of tests -- blood work, stool tests, abdominal CAT scan -- to check on flare up issues.  My doctor just sent me a letter with a prescription for Enticort, and this thread helped me feel better about taking it.  I'm currently on Pentasa, Flagyl(just for 10 days) for the mild infection and now Enticort.

I really appreciate that I can come here and find people who have experienced what I'm going through. tongue

Posted 12/7/2007 4:35 PM (GMT 0)
This is a great place to be...people are so helpful. Thanks to everyone I do feel better about taking it.
Posted 12/7/2007 5:16 PM (GMT 0)
I have been on Entocort for about 7 months now. In the beginning I had a headache for about a week. After that, everything has been GREAT. No other side effects. It has helped me so much.
Posted 12/8/2007 1:25 AM (GMT 0)
I have been on Entocort for about 1-1/2 years now, tapering off as we speak because I started Humira about 2 months ago. Entocort is the ONLY med that has worked for my CD, only downside I noticed is swelling of feet/ankles/calves, but Dr. gave me Lasix and when swelling flares up I take Lasix and it goes away. I sing blessings to high heaven for Entocort...haha...good luck to you!
Posted 12/8/2007 9:51 AM (GMT 0)
Well i've been on entocort for about a month and a half and I've gained 15 pounds and I can't sleep. I don't know If this is normal. But it is frustrating!!!! Anything I can do? And for some reason my bladder doesn't seem to work I feel like i'm 6 months pregnant i have to pee every 10 mins?


Post Edited (sierra1) : 12/8/2007 2:50:18 AM (GMT-7)

Posted 12/8/2007 10:04 AM (GMT 0)
I loved entocort compared to prednisone. I didn't notice any side effects with it at all. no weight gain, nothing, but everyone is different. I had to switch from entocort to prednisone about this time last year because I had a stricture in my illeum and my GI doc was wanting to avoid surgery, which so far it's better and I haven't needed a resection.

I hope you respond to teh entocort. It helped me a lot!!

Molly

Posted 10/19/2008 3:47 PM (GMT 0)
Hi, I have a question for ANYone.

I am also, new here

I have had crohn's disease for 46 years. Back then they did not know what the heck it was and I was 14 having been taken to about 15 doctors before having emergency surgery.

There have been a few colon resections and the meds I have been on have been tolerable. Even the predinsone, even though it was not my favorite.

Actually I have been doing okay and I know what I can and cannot have, and any sign of symptom.

Since really not feeling good over the last couple of months, knowing I was due to go see doc for colonoscopy. Whoopee!! My colon is quite inflammed and he says my rectum looks like raw hamburger. Hate to be graphic, but you understand.

He put me on this Entorcort........and i have been reading the side effects....I guess I do not have to tell you how scared I am. Doc says it is all RARE...but still.....................

Called my pharmacist this morning, as he knows me well. He suggested getting on here and checking things out. Am i being a baby?

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