Hi all,
I have been posting as a newbie in the main message board, with the basic drift being my serious flare-up over the last few months and the apparent lack of knowledge of my GI. He has never heard of, and is overtly suspicious of, the use of entocort as therapy in MC.
My own relatively superficial amateur research of medical articles online, along with the contributions of other forummers, has revealed the ignorance of my GI, clearly contradicting him: entocort is repeatedly and explicitly stated as a go-to therapy for sufferers of MC.
That said, I certainly don't want to jump into the use of entocort, and (after having another colonoscopy/endoscopy just today) will try my utmost to make a success of combining OTC medication (imodium + pepto) and a change in diet--I have had some kind of remission for well over a year and would prefer to get back there again without the use of a steroid.
I have given up dairy and am on a low fiber diet; when I have recovered from today's colonoscopy, I will resume (gently) the OTC remedies as needed.
My question is this: in bullet point form could forummers please spell out the disadvantages and side-effects of entocort?
a) I am already aware that is doesn't heal so much as buy time for healing--those who stop it often (usually?) relapse
b) I also have read that little of the drug leaks out of the intestine, and that it is very targeted, limiting side effects--is this true?
c) But what else should I know (since my GI evidently knows so little)? What general side effects does it have?
d) How long do most folks stay on it?
Thank you so much in advance!!
Entocort--some basics please!
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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Pebbledash
- Gentoo Penguin
- Posts: 260
- Joined: Sun Aug 11, 2013 1:37 pm
Hi,
Please understand that these answers are not chiseled in stone, because we all respond differently to various medications, and some members here are unable to take Entocort because of severe side effects, so these answers are simply my opinion based on reading about the experiences of many hundreds of members here who have been able to use Entocort successfully in their treatment program.
a) I am already aware that is doesn't heal so much as buy time for healing--those who stop it often (usually?) relapse
That's often true if you follow a relatively fast dosage taper, as recommended by many GI specialists. Many members here have had much better luck at maintaining remission by tapering the dosage much more slowly, especially the later part of the withdrawal period.
b) I also have read that little of the drug leaks out of the intestine, and that it is very targeted, limiting side effects--is this true?
None of it is absorbed into the bloodstream in the colon, but research shows that since it begins to activate in the terminal ileum, up to 19 % of it can be absorbed into the bloodstream in the small intestine (in the terminal ileum). This limits the side effect risk to roughly one-fifth of the risk of side effects associated with other corticosteroids (such as prednisone).
c) But what else should I know (since my GI evidently knows so little)? What general side effects does it have?
It's impossible to predict side effects. Some have none, some have several. Here is a link to a relatively complete list of the possible side effects of Entocort EC:
Entocort EC Side Effects
d) How long do most folks stay on it?
Typically from 6 months to a year or more.
You're very welcome.
Tex
Please understand that these answers are not chiseled in stone, because we all respond differently to various medications, and some members here are unable to take Entocort because of severe side effects, so these answers are simply my opinion based on reading about the experiences of many hundreds of members here who have been able to use Entocort successfully in their treatment program.
a) I am already aware that is doesn't heal so much as buy time for healing--those who stop it often (usually?) relapse
That's often true if you follow a relatively fast dosage taper, as recommended by many GI specialists. Many members here have had much better luck at maintaining remission by tapering the dosage much more slowly, especially the later part of the withdrawal period.
b) I also have read that little of the drug leaks out of the intestine, and that it is very targeted, limiting side effects--is this true?
None of it is absorbed into the bloodstream in the colon, but research shows that since it begins to activate in the terminal ileum, up to 19 % of it can be absorbed into the bloodstream in the small intestine (in the terminal ileum). This limits the side effect risk to roughly one-fifth of the risk of side effects associated with other corticosteroids (such as prednisone).
c) But what else should I know (since my GI evidently knows so little)? What general side effects does it have?
It's impossible to predict side effects. Some have none, some have several. Here is a link to a relatively complete list of the possible side effects of Entocort EC:
Entocort EC Side Effects
d) How long do most folks stay on it?
Typically from 6 months to a year or more.
You're very welcome.
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.
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fatbuster205
- Gentoo Penguin
- Posts: 342
- Joined: Tue May 22, 2012 7:53 am
- Location: Carrickfergus, Northern Ireland
Hi Pebbledash,
a) I am already aware that is doesn't heal so much as buy time for healing--those who stop it often (usually?) relapse
My understanding is that it assists in healing by reducing the inflamation. In my case, the inflamation was markedly exhibited through pain mainly in the RHS. I increased my dosage and pain stopped and symptoms calmed down.
b) I also have read that little of the drug leaks out of the intestine, and that it is very targeted, limiting side effects--is this true?
I agree with Tex on this!
c) But what else should I know (since my GI evidently knows so little)? What general side effects does it have?
Main ones I had initially was being really energetic and doing things like the ironing in the middle of the night. I am not having that problem any more. I am definitely hungrier on Entocort but I am staying in control of that and not overeating so my weight has remained static.
d) How long do most folks stay on it?
I have been on it since July 2012 and am tapering 6mg 3mg alternatively at the moment. I came off it too quickly a few months back and had to start again so I am taking it much more slowly. All going well I will be off it by Christmas!
Anne
a) I am already aware that is doesn't heal so much as buy time for healing--those who stop it often (usually?) relapse
My understanding is that it assists in healing by reducing the inflamation. In my case, the inflamation was markedly exhibited through pain mainly in the RHS. I increased my dosage and pain stopped and symptoms calmed down.
b) I also have read that little of the drug leaks out of the intestine, and that it is very targeted, limiting side effects--is this true?
I agree with Tex on this!
c) But what else should I know (since my GI evidently knows so little)? What general side effects does it have?
Main ones I had initially was being really energetic and doing things like the ironing in the middle of the night. I am not having that problem any more. I am definitely hungrier on Entocort but I am staying in control of that and not overeating so my weight has remained static.
d) How long do most folks stay on it?
I have been on it since July 2012 and am tapering 6mg 3mg alternatively at the moment. I came off it too quickly a few months back and had to start again so I am taking it much more slowly. All going well I will be off it by Christmas!
Anne
If you ever feel too insignificant to be noticed, you have never been to bed with a mosquito!