Starting Entocort Tomorrow

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Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 3/12/2010 8:13 PM (GMT -7)   
Hi Everyone :)
 
  I had a capsule endoscopy on Wednesday, and have to wait 3 weeks for the results because my GI is going on vacation, but in the meantime, he's starting me on 9mg of Entocort because I have this right sided pain ever since I came off Prednisone in December and he's thinking that I might have Crohn's disease after all....
 
  I was curious for whoever has taken it, what are the side effects and how long did it take to start working? I know that it is a steroid and is supposed to be more topical than systemic, so I'm guessing any side effects will be considerably less than I had on Prednisone. (hopefully as Prednisone was just horrible)  Also I have had this pain constantly since December so I'm anxious to get rid of it, should it be a flare up of Crohn's in the Terminal Ileum and ascending colon.. (that's what it feels like anyhow)..
 
  I appreciate any replies very much~!  Thanks everyone :)
 
 
 Diagnosed with Ulcerative Colitis January 31st, 2005, Testing for Crohn's 3/10
 Prior Meds:
Canasa, Rowasa, Lialda, Apriso, Prednisone, 1 infusion of Remicade.. none of those worked for too long... Had neurological complications from the Remicade...
 Current Meds:
Pentasa 2000mg 2x a day, Entocort 9mg daily, Nexium 40mg once a day, Wellbutrin 150mg once a day. Culturelle 2x a day, Xanax as needed and Ambien at night for sleep..  
       http://www.myspace.com/77016897  


Valerie3
Veteran Member


Date Joined Feb 2009
Total Posts : 529
   Posted 3/12/2010 8:22 PM (GMT -7)   
Entocort works pretty quickly, within about a week or so. I've been on it for a year with no side effects whatsoever. I remember that initially, I started feeling better a couple of days after I started taking it, but my symptoms never fully went away and then started getting worse again a couple of months later. I hope it works for you!

debilitated
Regular Member


Date Joined Jan 2010
Total Posts : 448
   Posted 3/12/2010 8:27 PM (GMT -7)   
The only side effect i EVER felt on entocort... And I have been on it for years.. was upper achy back pain for a week.
Other than that... Only 30% of it absorbed pretty much. 9mg = 45mg of prednisone technically. 30% of 45 is 13.5...

So, the side effects of entocort is like taking 13.5 mg of prednisone "kind of". BUT much more minimal..

To make a long story short.. Side effect free.

junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/12/2010 8:42 PM (GMT -7)   
our stories are close... I too just finished the pillcam.. and will start endocort tomorrow.

Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 3/12/2010 9:05 PM (GMT -7)   
Thanks everyone :)

Junerainbow, have you been diagnosed with Crohn's disease yet? I haven't, but my GI is very suspicious. I was originally diagnosed with Ulecrative Colitis and had bleeding that just wouldn't quit. I bled for over a year straight and after 8 months of Prednisone at 50mg and 1 Remicade infusion the bleeding finally quit. Then after coming off Prednisone, this right sided pain started... GEEZ... It's just been one thing after another. I can't take Remicade anymore because I'm one of like 1 percent of people who got Neurological side effects from the Remicade, even though it pretty much put me in remission overnight.. I was soooooo bummed when they told me I can't take that or any biologic medicines now.. :(

We should keep in touch and compare how Entocort does for us.. I'm sooo curious and hopeful that it get's rid of this nagging pain.. I want my regular life back!!! I haven't been on my horse for quite a few weeks now.. UGH...
 Diagnosed with Ulcerative Colitis January 31st, 2005, Testing for Crohn's 3/10
 Prior Meds:
Canasa, Rowasa, Lialda, Apriso, Prednisone, 1 infusion of Remicade.. none of those worked for too long... Had neurological complications from the Remicade...
 Current Meds:
Pentasa 2000mg 2x a day, Entocort 9mg daily, Nexium 40mg once a day, Wellbutrin 150mg once a day. Culturelle 2x a day, Xanax as needed and Ambien at night for sleep..  
       http://www.myspace.com/77016897  


junerainbow
Regular Member


Date Joined Feb 2010
Total Posts : 403
   Posted 3/12/2010 10:08 PM (GMT -7)   
Hi, I have been severely sick since christmas. I have been having urgent bm's about 10 to 15x a day, fatigue, joint pain, crampiness and alot of mucus. I have lost almost 20 lbs. I have been off work since Jan 7 because the need for a bathroom is so urgent that I cannot work since I work in a telecenter. They were stumped, they did a colonoscopy, ct, barium small bowel follow through and a pill cam.. the pill cam got stuck. They repeated the pill cam by pushing it through with an endoscope bypassing my stomach. They have been very hesitant to call it crohn's. The dr who looked at the scans from the second pill cam called me today and said crohn's. He then conferred with his colleague who agreed. They had refused to treat me until this point.. so tomorrow morning I start the entocort.

it sounds like you have been through so much.. I am still very new to this..I have had terrible medical problems for over ten years now.. my cousin had severe crohn's with many surgeries but I never knew that you could just suddenly have crohn's, or I guess rather a flare up..still wrapping my mind around all of this.

I am hopeful too... definitely keep in touch..I wish you the best of luck.

Susiebuddy
Veteran Member


Date Joined Feb 2005
Total Posts : 1373
   Posted 3/13/2010 12:01 AM (GMT -7)   
OMG.. you've had all the tests I had.. I had my first colonoscopy when originally diagnosed with Ulcerative Colitis and my next one is May 14th... EEK.. Actually the test is a piece of cake, the prep is the sucky part.. lol..... I've had the CT, Small bowel follow through, (That one REALLY sucked didn't it?? LOL) it was like drinking 24 ounces of crappy tasting pancake batter.. LOL... and then the pill cam on Wednesday..

My GI was originally suggesting I have my colon removed and get a permanent Ileostomy because of the U/C, but since I got this right sided pain when I came off steroids to get ready for the surgery, now they don't want to remove anything in case it is Crohn's. I guess you have to keep what ever intestines you can with Crohn's because it can hit you anywhere and removing your colon doesn't cure you like it can with U/C.. *sigh* So much for my light at the end of the tunnel.... lol..

Well, I'm wishing us both success with Entocort and hopefully we're both feeling better sooner than later~!
 Diagnosed with Ulcerative Colitis January 31st, 2005, Testing for Crohn's 3/10
 Prior Meds:
Canasa, Rowasa, Lialda, Apriso, Prednisone, 1 infusion of Remicade.. none of those worked for too long... Had neurological complications from the Remicade...
 Current Meds:
Pentasa 2000mg 2x a day, Entocort 9mg daily, Nexium 40mg once a day, Wellbutrin 150mg once a day. Culturelle 2x a day, Xanax as needed and Ambien at night for sleep..  
       http://www.myspace.com/77016897  


vixen
Veteran Member


Date Joined Jan 2010
Total Posts : 794
   Posted 3/13/2010 2:05 AM (GMT -7)   
Entecort side effects- chest plastered in a rash and face covered in acne.

jesse's_girl
Regular Member


Date Joined Dec 2009
Total Posts : 70
   Posted 3/13/2010 9:02 AM (GMT -7)   
I had some side effect from the Entocort: acne (I was never one for many pimples), knee and back pain. The bathroom symptoms went away at first, I felt allot better but then it just kinda stopped working after about 2.5 months. I then tapered off of it per my GI. My GI told me that the knee pain could not have been caused from the entocort but it was the only change to my meds and then it did go away after I stopped taking it, so draw your own conclustion. I also found info on the web about side effects of entocort causing Aseptic Necrosis of the knees and hips and that you should contact your dr "promptly" if you have knee or hip pain. But when I did let my GI know he blew me off saying it was not caused by the entocort. Be careful and look at all of the side effect so you know what to look for.
Diagnosed Endometriosis 1998, Crohns 2008
Drugs: Pentasa, Entocort, B inj


Nanners
Elite Member


Date Joined Apr 2005
Total Posts : 14995
   Posted 3/13/2010 9:08 AM (GMT -7)   
Most tolerate Entorcort much better than Prednisone as Entocort has less side effects. I hope it helps to heal your pain. Hugs~
Gail*Nanners* Co-Moderator for Crohns Disease & Anxiety/Panic
Crohn's Disease for over 34 years. Currently on Asacol, Prilosec, Estrace, Prinivil, Diltiazem, Percoset prn for pain, Zofran, Phenergan, Probiotics, Calcium, Vit D, and Xanax prn. Resections in 2002 & 2005. Also diagnosed w/ Fibromyalgia, Osteoarthritis, & Anxiety. Currently my Crohns is in remission, but my joints are going crazy!
*Every tomorrow has two handles.  We can take hold of it by the handle of anxiety, or by the handle of faith"*
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