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Pmkrier
Regular Member


Date Joined Apr 2010
Total Posts : 69
   Posted 7/11/2010 12:42 PM (GMT -7)   
I've been feeling pretty good taking this stuff! Has anyone else felt good while on this drug? It's supposed to keep my stricture open until surgery.

Just seeing if it was actually the steroid or maybe its just the special diet I'm on..


Take care!
Crohn's Disease. Diagnosed in 1997 at the age of 10.
Currently on: Monthly B-12 injections, 6MP, Calcium, Multi-Vitamin, Vitamin D, Prilosec, just starting Humira
Surgery scheduled: August 19 2010 - small bowel resection in TI


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/11/2010 12:56 PM (GMT -7)   
Pmkrier: I am on Entorcort and yes it is a steroid but a bit different from other oral meds. This one is formulated to be absorbed and active only in the GI tract and so it minimizes all the bad things that a regular steroid would have -bone loss, water retention, mood changes etc. For me I still have some of the hunger issues that I try to manage (ya know its bad when the paint on the wall looks good). Steroids are very effective anti-inflammatories and so I think its interesting they are trying to shrink your stricture down with this drug. Seems like it would be an effective method to at least try. This drug has certainly helped me wasn't too sure what I was going through would be compatible with life! Hope all works out well for you. Barb



Symptoms since Jan 2009, Dx UC vs crohns May 2010 but probably small bowel Crohn's dz, biopsies all "normal"

Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin

When the people fear their government, there is tyranny; when the government fears the people, there is liberty. Thomas Jefferson


CrohnnieMan
Regular Member


Date Joined Aug 2008
Total Posts : 190
   Posted 7/11/2010 8:57 PM (GMT -7)   
I didn't have a lot of luck with entocort and took it for several months. Glad to hear its working for you.
Feeling the best I have in several years! And it keeps getting better!

4mg LDN at bedtime, 500mg Pentasa 3x/day, 1,000 I/U Vitamin D3 2x/day, 1 Nature's Way Primadophilus Reuteri in the morning and 1 at bed time, 1 Coromega Omega 3 pack 2x/day
----------------------------------------------
Medication prior to taking LDN: 100 mg Imuran a day (GI wanted 150 mg), 1,000 mg of Pentasa 4x/day, 3 mg of Entocort 3x/day, Librax as needed.


fongers06
Regular Member


Date Joined Jul 2008
Total Posts : 82
   Posted 7/12/2010 8:16 AM (GMT -7)   
I have been on the Entocort for almost a year now. I have had a few days where for some reason or other I forgot to take it and I could really tell a difference. Don't get me wrong - still have pain and other issues, but this is probably the thing that has helped me the most since I have been sick.
Diagnosed with Crohns in May 08
Resection in November 08
Currently on Humira, Entocort, Xifaxan, Zoloft, Ritilan SR, B12 injections, Calcium and Vitamin D
Married, mother of 4


tulipg17
Regular Member


Date Joined Jun 2010
Total Posts : 113
   Posted 7/12/2010 8:41 AM (GMT -7)   
Worked for me very well with hardly any side effects- except and slow but steady weight gain. I would take it over prendisone anytime though, but it did cause significant weight gain over the course a few months, just fyi.

HM
Regular Member


Date Joined Sep 2008
Total Posts : 211
   Posted 7/12/2010 1:32 PM (GMT -7)   
I have been taking endocort for three years now. I am currently trying to go off of it for the fifth time--every time I end up right back on it.  Of course, I am praying that this time is different.  The drug as been a blessing to me--like the others have said there are still symptoms, but they are more managable.   I too have steadily gainned weight on the drug(which I didn't need to do), but the benifits outweigh the gain.  I am doubling up on calcium to help prevent the drug from bring on osteoporosis.

37/f   proud single mom of 2

Diagnosed with GERD/Acid Reflex 2002

Diagnosed with IBS 2007

Diagnosed with Arthritis 2007

Diagnosed with UC, then Crohn’s 2007

Diagnosed with Generalized Anxiety Disorder 2008

 

Current medications: Asacol 2 tablets 3X daily, Imuran 100 mg daily,Endcort 3mg 3X daily, Pentasa 2 500mg caps 2X daily, Prilosec 20 mg 2X daily (if needed), .05 mg Zanax (if needed) Probiotics, Calcuim/Mag/Vit.D. Flinstones multi with Iron, Young Living Omega 3, Young Living Core Supplements


Randi
Regular Member


Date Joined Feb 2004
Total Posts : 72
   Posted 7/12/2010 1:53 PM (GMT -7)   
I have been on Entocort for over a year. This is the medication that has worked the best for me. It's my last resort before opting for a surgery to remove two strictures. I believe the Entocort works the best with low fat diet and low fiber diet to stop the gurgling I experience. It's allowed me to incorporate more veggies into my diet now and then when I couldn't stomach them before (ha stomach!). I have had mild weight gain and increased facial hair, man I could use more on sparse areas of my eyebrows, never where you want it eh? smhair little bit of moonface. Side effects are not like predisone, much much better on this.

Also, I did not take it for a few days because of UPS issues with getting the refill delivered and had what seemed like a withdrawal reaction occurred where I was zapped of energy had the chills and sweats, it was bad, took about a week to recover, something to be mindful of don't stop this abruptly, wean off.
Randi: is dandi!


NiceCupOfTea
Veteran Member


Date Joined Jan 2010
Total Posts : 8545
   Posted 7/12/2010 2:32 PM (GMT -7)   
I'm almost at the end of a 10-week course of Entocort and it's made no difference at all that I can detect. But I wasn't surprised, as prednisone did almost nothing for me either. Just don't seem to particularly respond to steroids, good or bad. I get a bit more energy on the highest dose, that's about it.

tall girl
Regular Member


Date Joined Apr 2009
Total Posts : 68
   Posted 7/12/2010 4:00 PM (GMT -7)   
I was on Entecort for 4 months. The first month I felt great!! No symtoms at all. All of a sudden it stopped working. I ended up having surgery due to a large abcess and a perferation. I starting flaring again a few months ago and went back on Entecort....It didn't work. I am starting Remicade this week. I hope it continues to work for you!!
26/year old Female- Crohns active since June of 08- DXed (finally!) March 09- Resection June 09- remmission for 1 year- flaring now - Starting Remicade on 7/15/10- Scared again after a year of denying I was sick.......... Thankful I have a good support system behind me.


Grandpato2
Veteran Member


Date Joined Dec 2009
Total Posts : 681
   Posted 7/14/2010 1:14 AM (GMT -7)   
Unfortunatly I've been on too much steroids and my specialist doesn't want me on them any more. I finally got her permission to use them very short term when I get blockages. When the cyclical pain starts I take 3 capsules (9mg) for 1 day if the pain is cyclical for the second day then I take 3 more then I taper to 2 and then 1 capsule and off. I have great responce to entocort and it brings down the swelling extremely quickly.
Male, 55 years old with Crohn's since 15 years old, diagnosed at age 46. Terminal ileum resected 2002. 5 months of remission. Crohn's has now been active since May, 2003. Had a gall bladder removed Nov. of 2009. Currently on Remicade every 8 weeks, Nexium, Iron, B-12 injection every 4 weeks, Morphine Sulfate as needed for pain. Cymbalta for long term pain control. In the past, 5-asa Salofalk, Asacol, Entocort,  Imuran and Prednisone.


JAB
Regular Member


Date Joined Nov 2003
Total Posts : 351
   Posted 7/14/2010 8:34 AM (GMT -7)   
hello!
I was actually on Entocort for over a year some time back and it had a minimum affect on my inflammation. I can't say it did a whole lot. Recently my doctor put me back on it since the Humira has for the most part stopped doing anything for me. I can't say that the entocort is doing much for me now. I do know that I'm not as bad as I would be without any medication so something is working a little bit.
 
Glad to hear that you are feeling better. Live it up. : )

Pmkrier
Regular Member


Date Joined Apr 2010
Total Posts : 69
   Posted 7/14/2010 5:53 PM (GMT -7)   
I spoke too soon...
I feel like crap again. I had a good 3 days of feeling good at least lol
Crohn's Disease. Diagnosed in 1997 at the age of 10.
Currently on: Monthly B-12 injections, 6MP, Calcium, Multi-Vitamin, Vitamin D, Prilosec, just starting Humira
Surgery scheduled: August 19 2010 - small bowel resection in TI


grumpygi
Regular Member


Date Joined May 2010
Total Posts : 266
   Posted 7/14/2010 6:06 PM (GMT -7)   
It took me about 3ish weeks to feel more "normal" . .. (will leave it at that . . .:)  But darn . . . .the paint on the wall looks tasty . . . ..do you think that there is calcium in dry wall . . ..
Meds: Celebrex, Omeprazole, Liadla, Entocort EC 9mg/day, Vit D, Mulitvit, Omega 3's, Ambian, Neurontin.
 
 
 


njmom
Veteran Member


Date Joined Apr 2006
Total Posts : 1884
   Posted 7/14/2010 8:11 PM (GMT -7)   
Entocort worked great for my daughter, keeping her disease under control with no serious side effects. She ended up in the hospital the first time she tried to taper off it, even though she had recently started the SCD diet...and it took longer for it to reach full effectiveness after the hospital stay.
 
So neither she nor we wanted to take any chances...so she stayed on it for at least three years. We think the SCD diet with the Entocort did the trick. After the third year, and with the help of diet and LDN, she was able to taper off Entocort.
 
It has been about 10 months since she stopped Entocort. Her eye doctor said her eye pressure test had a reading of 14. We found it tended to be higher while on Entocort (anywhere from 18 to the low 20s). So, maybe the reduction in eye pressure is a coincidence, but maybe not...
Daughter (22) Dx'd Crohn's 3/06. Misdiagnosed for two years, including by top pediatric Crohn's specialist as stress. No symptoms for the past three years. March '09 colonoscopy showed stricture gone but two spots of inflammation in TI. Used LDN to taper off Entocort last fall. (Was on Entocort since April 06.) Never had D. 4.5 mg LDN, SCD multivit, homemade yogurt, 2000IU vit D3, 1000 mg calcium, 27-54 mg iron, monthly B12 shots, daily oral B12 twice a day (one B complex, then later one B 500), 10mg zinc. SCD diet. 

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