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Posted 7/11/2010 7:42 PM (GMT 0)
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!
Posted 7/11/2010 7:56 PM (GMT 0)
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
Posted 7/12/2010 3:57 AM (GMT 0)
I didn't have a lot of luck with entocort and took it for several months. Glad to hear its working for you.
Posted 7/12/2010 3:16 PM (GMT 0)
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.
Posted 7/12/2010 3:41 PM (GMT 0)
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.
Posted 7/12/2010 8:32 PM (GMT 0)
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.
Posted 7/12/2010 8:53 PM (GMT 0)
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.
Posted 7/12/2010 9:32 PM (GMT 0)
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.
Posted 7/12/2010 11:00 PM (GMT 0)
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!!
Posted 7/14/2010 8:14 AM (GMT 0)
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.
Posted 7/14/2010 3:34 PM (GMT 0)
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. : )

Posted 7/15/2010 12:53 AM (GMT 0)
I spoke too soon...
I feel like crap again. I had a good 3 days of feeling good at least lol
Posted 7/15/2010 1:06 AM (GMT 0)
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 . . ..
Posted 7/15/2010 3:11 AM (GMT 0)
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...

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