Feel free to discuss any topic of general interest, so long as nothing you post here is likely to be interpreted as insulting, and/or inflammatory, nor clearly designed to provoke any individual or group. Please be considerate of others feelings, and they will be considerate of yours.
Hey guys, life has been hectic, my computer at home is waiting to be repaired and I'm sneaking a quick thread here at work (shh).
My GI wants me to stop Entocort cold turkey. After 12 weeks, which is two more weeks, he wants me to discontinue and see him two weeks later.
I have not been better.... Well, I am definitely better than before I began the Entocort and before I discontinued all my bad foods but I still have episodes of D and cramping/bloating.
What do I do? I'm so afraid to go off of it.
Joanne
"A Journey Of A Thousand Miles Must Begin With A Single Step"
I had to stop cold turky: result: adrenal insuficiency (addison's disease), it took me months to get rid of it! I was sooooo sick. I couldn't do anything. I was a mess because of it. My GI made that mistake with me...
When you take entocort (cortisone), your adrenal glands stop making the usual dose of the hormone cortisol... You have to wean it of, so that your adrenal glands can create cortisol, at its own paste. You can only stop cold turky, if you took entocort for 3 weeks, maximum! If you took it longer than 3 weeks, you have to wean it off.
So I stay on it and when I see him next month, I tell him what? I already asked to be weened off of it and cold turkey was his response. Should I call him again and tell him that I'm really worried about what may happen? I'm not even healed yet!
Joanne
"A Journey Of A Thousand Miles Must Begin With A Single Step"
Hi Jazi,
From what I can gather, most doctor's don't have you go off Entocort cold turkey especially after a prolonged duration. Usually you wean slowly, taking only two pills a day, then one pill, then one pill every other day etc.... Many people on this board have stayed on Entocort long periods, 6 months or more. The average prescription is around 6 weeks and then taper off but only if the drug is working and the guts inflammation has died down. You may want to ask your doctor for an extension and be sure to combine the prescription with a GF diet.
Best of luck,
Cory
CoryGut
Age 71
Diagnosed with Lymphocytic Colitis Sept. 2010
On and off Entocort(Currently Off)
Don't do it Jazi. Please let your doctor know that you know many other people who were on this drug and relay our experiences.
Would he just make someone stop cold turkey if they were on Prednisone? NO.
Whether you should be done with this drug depends on whether you think it has helped you. If it has, then you should ask to stay on it for a while longer. Data has shown that people who stop too quickly, relapse much more then those who don't. I was on it for 6 months...the last month was spent weaning SLOWLY off of it.
PS. if you are still having D, cramping , and bloating, then you probably haven't addressed ALL your food issues. You may have to look at your level of histamine foods that you are eating.... or maybe cross contamination?
If you feel that you need your prescription renewed, and your GI doc refuses to do that, you might ask your PCP for a renewal/extension. Many members here have found that if their GI specialist won't extend their prescription, their PCP will, because in general, PCPs seem to have a much higher level of understanding and compassion for the needs of their patients.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi jazi, 3 months for most of us is not enough time i.e =high incidence of relapse· see pardi article i bumped up and if need be take a copy to your pcp or gi doc· mayo references many patients will need to be on ento 6 mths or more, sorry about typos i'm on a biz trip. Brandy
and I'm sneaking a quick thread here at work (shh).
He intimidates me.
