Entocort is a wonderful drug for treating MC. It brings quick relief to most of us. I'm indebted to it for giving me my life back.
The difficulty seems to arise when we want to get off of it. I have tried to get off it several times over the past three and a half years that I've been taking it. I always thought the problem was me, and my numerous intolerances. But lately we've seen others who are just as diligent in their diets have problems getting off of it, too: Ant, Harma, and Linda to name a few. JoAnn seems to be the only one recently to have passed the 56 day probation period. That's not a very good track record.
I thought for sure that Linda would be home free. She was taking just one Entocort pill every four days, yet she relapsed.
An additional twist is that once we relapse, it's a seemingly permanent relapse. No matter how much we change our diets, the flare continues until we go back on Entocort. A year ago, I wasn't even off Entocort; I was still taking one pill a day when I went into a protracted relapse.
It seems that we are under an illusion of remission while we are on Entocort. We don't find out that we can't maintain remission until we go off of it, and sometimes it's 56 days before we find out.
I'm reading about others here who have had the MRT testing. The ones past the initial three phases (weeks) are trying new foods, some, a new one each day. I've been doing the LEAP diet for 46 weeks - nearly a year, and I'm still afraid to try new foods. I'd estimate that I'm still just past phase three. What's the difference? One is that the other MRT people aren't taking Entocort. They seem less concerned about a sustained relapse than I am. They will react immediately or soon thereafter to a food that is disagreeable. I may or may not react to it. I never know if Entocort is suppressing my reaction.
I'm at a crossroads. I'm tempted to try new foods, but like Linda, I'm afraid I will have to start over once I go off Entocort and subsequently end up taking it again. It's become a vicious cycle for me. I think I should first go off Entocort to see if I can maintain remission for 56 days. Perhaps I should try Imodium if I have problems while being off Entocort, allowing more immediate feedback. Once I pass the 56 day probation, I could begin testing new foods.
I'm interested in your thoughts.
Gloria
The Entocort Dilemma
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
The Entocort Dilemma
You never know what you can do until you have to do it.
Dear Gloria,
You have posed a hard question and laid your reasoning out very well. I'm not sure I can give you an answer, since I don't have to walk in your shoes.
I have taken Entocort for short periods of time (3-4 months) and haven't had any for over 3 years. I have had short term relapses (a few days) and have been able to handle those with Imodium. These have usually be an overindulgence of roughage or fiber that still effects me (like salad or popcorn). That said, I do not have the food intolerances that you and some of the others do.
I know how hard you have worked to get where you are, what you have given up and how devastated you have been when you have had a relaspe. I guess my question back to you, as you try to make this decision, is how strong you are emotionally if you do relapse.
Whatever you decide, I will be here to support you.
Jan
You have posed a hard question and laid your reasoning out very well. I'm not sure I can give you an answer, since I don't have to walk in your shoes.
I have taken Entocort for short periods of time (3-4 months) and haven't had any for over 3 years. I have had short term relapses (a few days) and have been able to handle those with Imodium. These have usually be an overindulgence of roughage or fiber that still effects me (like salad or popcorn). That said, I do not have the food intolerances that you and some of the others do.
I know how hard you have worked to get where you are, what you have given up and how devastated you have been when you have had a relaspe. I guess my question back to you, as you try to make this decision, is how strong you are emotionally if you do relapse.
Whatever you decide, I will be here to support you.
Jan
While you are proclaiming peace with your lips, be careful to have it even more fully in your heart. - Saint Francis of Assisi
Jan,
Thank you for your response.
I've forgotten that you once took Entocort and have been able to get off of it. My statistic for those like you is probably undercounted since we don't hear from a lot of people once they're in remission.
I have pretty much decided that if I relapse this time, I'm going to resign myself to being on Entocort for the rest of my life. There aren't a lot of foods left for me to eliminate. I believe I'm eating about 10-15 different ones, and I have tested deficient in potassium. Staying on Entocort would probably allow me to expand my diet.
I'm OK with staying on it, as long as it continues to do the job and I can buy it cheap overseas or get a generic version. It would be terrific if I would be like Grannyh and suddenly find I can get off of it. Somehow, I don't think that will happen by chance.
Gloria
Thank you for your response.
I've forgotten that you once took Entocort and have been able to get off of it. My statistic for those like you is probably undercounted since we don't hear from a lot of people once they're in remission.
I have pretty much decided that if I relapse this time, I'm going to resign myself to being on Entocort for the rest of my life. There aren't a lot of foods left for me to eliminate. I believe I'm eating about 10-15 different ones, and I have tested deficient in potassium. Staying on Entocort would probably allow me to expand my diet.
I'm OK with staying on it, as long as it continues to do the job and I can buy it cheap overseas or get a generic version. It would be terrific if I would be like Grannyh and suddenly find I can get off of it. Somehow, I don't think that will happen by chance.
That's an important consideration. I've always tempered my hope with reality because of something I read by Emerson years ago. Something to the effect that we have no right to expect something unless we are just as willing to accept that we might not get it. I'm sure I'll be disappointed if I relapse, but I feel like I've tried everything. I was more devastated the last time because of a situation here which I won't go into. I am a pretty stable person; people who know me describe me as "steady." It is important to know that the board members will be here to support me - thank you for yours.Jan wrote:I guess my question back to you, as you try to make this decision, is how strong you are emotionally if you do relapse.
Gloria
You never know what you can do until you have to do it.
Hmmmmm. You've made a very thought-provoking observation. Perhaps the propensity of the corticosteroids to interfere with healing is the main issue. Maybe the effect is persistent enough to virtually guarantee that remission will never "last", because the healing period becomes extended so far. As we all know, prednisone performs similarly, except that it is even more difficult to withdraw from.
Just thinking out loud.
Tex
Just thinking out loud.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.
Tex,
Yes, I've considered the same possibility. I knew that Sally had a very difficult time withdrawing from prednisone and have wondered if the same situation applies with Entocort for some people. Grannyh was on it for 6 years, but it doesn't seem to have affected her similarly.
Gloria
Yes, I've considered the same possibility. I knew that Sally had a very difficult time withdrawing from prednisone and have wondered if the same situation applies with Entocort for some people. Grannyh was on it for 6 years, but it doesn't seem to have affected her similarly.
Gloria
You never know what you can do until you have to do it.
Dear Gloria,
You are at quite a cross roads in terms of making a decision. It seems to me that if you decide to continue to expand the foods that you eat, it will be that much harder for you to ever get off entocort, because there will be too many foods to consider if you have a relapse. However, since you're willing to accept that you may have to stay on entocort for the rest of your life, this may be a very attractive option.
Since you've been doing so incredibly well lately, perhaps you should consider giving weaning off entocort completely one more try, without adding more foods at this point in time. Then, if on your very limited diet, you still go into a flare, and imodium does not help, you could get back on entocort at whatever dose will produce relief. Once your system settles down again, you can then go back to adding foods and expanding your diet, with the idea that you will stay on entocort indefinitely.
These are just my thoughts, having followed your posts. Whatever you decide, I will be here to support you to the best of my ability. You have contributed so much of yourself to this board, and I feel indebted to you for that. Lots of luck to you, and as usual I look forward to following along on your continuing journey.
Love and hugs,
Kari
You are at quite a cross roads in terms of making a decision. It seems to me that if you decide to continue to expand the foods that you eat, it will be that much harder for you to ever get off entocort, because there will be too many foods to consider if you have a relapse. However, since you're willing to accept that you may have to stay on entocort for the rest of your life, this may be a very attractive option.
Since you've been doing so incredibly well lately, perhaps you should consider giving weaning off entocort completely one more try, without adding more foods at this point in time. Then, if on your very limited diet, you still go into a flare, and imodium does not help, you could get back on entocort at whatever dose will produce relief. Once your system settles down again, you can then go back to adding foods and expanding your diet, with the idea that you will stay on entocort indefinitely.
These are just my thoughts, having followed your posts. Whatever you decide, I will be here to support you to the best of my ability. You have contributed so much of yourself to this board, and I feel indebted to you for that. Lots of luck to you, and as usual I look forward to following along on your continuing journey.
Love and hugs,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Dear Gloria,
A very thoughtful question.
My current lifestyle includes strict diet rules, but also eating out at some restaurants that know me, wine and (increasingly) quite a lot of vegetables - no legumes of course. I think this is only possible with the prop of one Entocort a day.
Reading about Polly's experience when she 'cheated' and tested two (non legume) vegetables, made me think that when I try and go the MRT way, I will need to become even more disciplined.
I have also thought about Tex's thought.
Can reducing inflammation of a still moderately inflamed gut (which I assume I still have whenever my BMs are not normal even while taking Entocort) be a net negative for healing, including helping junctions of the gut/blood barrier to be tight?
If I am still eating some undiscovered inflammatory causing foods and taking Entocort is my healing process in limbo?
IMHO while Entocort probably slows healing, I do not think, in itself, that it reverses the process and actually causes gut damage.
But, I also worry about the possibility of Entocort over time suppressing adrenals and thus the ability of the body to naturally produce corticosteroid (I think I have my science right here. Please correct me if I am wrong).
So, I hope that Entocort is not a one way street. The jury must still be out on this.
Gloria, it goes without saying that I will continue to learn from your experiences and wonderful sharing of it here......and will always try and support you on the long journey we are all on.
Best, ant
A very thoughtful question.
My current lifestyle includes strict diet rules, but also eating out at some restaurants that know me, wine and (increasingly) quite a lot of vegetables - no legumes of course. I think this is only possible with the prop of one Entocort a day.
Reading about Polly's experience when she 'cheated' and tested two (non legume) vegetables, made me think that when I try and go the MRT way, I will need to become even more disciplined.
I have also thought about Tex's thought.
Can reducing inflammation of a still moderately inflamed gut (which I assume I still have whenever my BMs are not normal even while taking Entocort) be a net negative for healing, including helping junctions of the gut/blood barrier to be tight?
If I am still eating some undiscovered inflammatory causing foods and taking Entocort is my healing process in limbo?
IMHO while Entocort probably slows healing, I do not think, in itself, that it reverses the process and actually causes gut damage.
But, I also worry about the possibility of Entocort over time suppressing adrenals and thus the ability of the body to naturally produce corticosteroid (I think I have my science right here. Please correct me if I am wrong).
So, I hope that Entocort is not a one way street. The jury must still be out on this.
Gloria, it goes without saying that I will continue to learn from your experiences and wonderful sharing of it here......and will always try and support you on the long journey we are all on.
Best, ant
----------------------------------------
"Softly, softly catchee monkey".....
"Softly, softly catchee monkey".....
Ant wrote:I do not think, in itself, that it reverses the process and actually causes gut damage.
I also agree that even at very low maintenance dosage rates, in the long run, budesonide will very likely suppress the adrenals, to some degree, so that natural cortisol production will be attenuated. However, remember that as long as you continue to take a corticosteroid, that issue is a moot point, (since the body reduces the cortisol production in response to the "supplementation" provided by the corticosteroid. It only becomes a viable issue if/when the corticosteroid is withdrawn. When that happens, the body may not be able to resume production of normal levels of cortisol, (at least not for a while).
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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MaggieRedwings
- King Penguin
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Morning Gloria,
What a position to be in. As you know I took Entocort and had pretty good results while on it. It slowed the D but never had a Norman. Unfortunately, I had adverse side effects and stopped it cold turkey. Took me a while but did not have too bad of results. However, It will not credit it ever with a Norman which now seems to be the majority of loo trips for me.
I do hope you can finally let it go and expand you meager offering of diet. You are so much a pioneer.
Love, Maggie
What a position to be in. As you know I took Entocort and had pretty good results while on it. It slowed the D but never had a Norman. Unfortunately, I had adverse side effects and stopped it cold turkey. Took me a while but did not have too bad of results. However, It will not credit it ever with a Norman which now seems to be the majority of loo trips for me.
I do hope you can finally let it go and expand you meager offering of diet. You are so much a pioneer.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
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Linda in BC
- Rockhopper Penguin
- Posts: 801
- Joined: Mon Apr 19, 2010 9:39 am
- Location: Creston British Columbia
Dear Gloria and all:
I apologize for being away from the board for so long and not being able to contribute to this discussion until now. I have just now read it. I haven't been able to come on the board since last Friday night I think. I worked 6 days in a row last week, had Sunday off and am now on my second week of six days. It's just a very busy time at work for me right now with lots of new learners coming out of the woodwork that all have to be assessed and matched with tutors, and lots of programs to be run. In addition to that, I should tell you all that my sister is terminally ill (cancer) and her condition is degenerating very quickly, so I have been assuming some of the responsibility for her care so that her daughter (my niece) doesn't have to do it all. She was diagnosed in Dec and we were told then that she had about 6 months to live. I suspect that will be accurate. We will probably have her in our lives for only another couple of months so I 'm trying to spend as much time with her as possible.
I am back down to one Entocort every second day now, and luckily the flare did not last long and I responded well to the Entocort. I did try to go four days without one soon after I started again ( that was schedule I had been on before I stopped taking it altogether) and after two days the D. returned. So I have decided to just take as much as I need to stay in remission for now. I don't have the time or the energy to figure out what it is that I am eating that is making me react when off of the Entocort right now. Given all that is going on in my life this is probably not a good time to be trying to stop the entocort. I am just so , so, SO grateful that I have it!!!! Without it I am sure I would be finding it very difficult to cope.
Gloria, when my stress level is less, I will be facing the exact dilemma you are now, and a dilemma it is! My thoughts on it at first were in agreement with what Kari said... that it makes sense to try to wean off the entocort until you have finally stopped (and I would say take your time doing this, like over a period of a few months again) keeping your ingredients few, and give the MRT diet a real chance. Others have experienced success with it, and you may too now, though it is understandable that you are hesitant to add in any new ingredients. Your last flare was hard to come out of and there is always the worry that the Entocort won't work as well the next time. For what it's worth though, it seems to be working pretty much as well for me as it did before. You do know that if things don't stay good, you do always have the entocort to take again. It is not like you are giving it up forever and consigning yourself to endless suffering if the diet doesn't work. You have a safety net.
However, you know, I think it would be perfectly understandable if you just just wanted to take a break from all of this thinking about food and diet and everything for while, and just enjoy your "remission", and try to add more foods back into your diet. And I can't think of any reason why you shouldn't. My goodness, Gloria, you have put so much time, effort , thought and work into getting better from this disease.. so much more than most of us have had to, and I think it ultimately comes down to how much more you are willing to do right now. You could just stop now and decide to continue with the entocort indefinitely or until you are ready to "take up the battle again". I am sure you are very tired of it. I know I am and I haven't been doing it a quarter as long as you have!!
Well, I've rambled on enough for tonight, and should get to bed. The rest (all 39!) of the new posts will have to wait till another time.
G'night all.... ZZZZZZ
Luv
Linda
I apologize for being away from the board for so long and not being able to contribute to this discussion until now. I have just now read it. I haven't been able to come on the board since last Friday night I think. I worked 6 days in a row last week, had Sunday off and am now on my second week of six days. It's just a very busy time at work for me right now with lots of new learners coming out of the woodwork that all have to be assessed and matched with tutors, and lots of programs to be run. In addition to that, I should tell you all that my sister is terminally ill (cancer) and her condition is degenerating very quickly, so I have been assuming some of the responsibility for her care so that her daughter (my niece) doesn't have to do it all. She was diagnosed in Dec and we were told then that she had about 6 months to live. I suspect that will be accurate. We will probably have her in our lives for only another couple of months so I 'm trying to spend as much time with her as possible.
I am back down to one Entocort every second day now, and luckily the flare did not last long and I responded well to the Entocort. I did try to go four days without one soon after I started again ( that was schedule I had been on before I stopped taking it altogether) and after two days the D. returned. So I have decided to just take as much as I need to stay in remission for now. I don't have the time or the energy to figure out what it is that I am eating that is making me react when off of the Entocort right now. Given all that is going on in my life this is probably not a good time to be trying to stop the entocort. I am just so , so, SO grateful that I have it!!!! Without it I am sure I would be finding it very difficult to cope.
Gloria, when my stress level is less, I will be facing the exact dilemma you are now, and a dilemma it is! My thoughts on it at first were in agreement with what Kari said... that it makes sense to try to wean off the entocort until you have finally stopped (and I would say take your time doing this, like over a period of a few months again) keeping your ingredients few, and give the MRT diet a real chance. Others have experienced success with it, and you may too now, though it is understandable that you are hesitant to add in any new ingredients. Your last flare was hard to come out of and there is always the worry that the Entocort won't work as well the next time. For what it's worth though, it seems to be working pretty much as well for me as it did before. You do know that if things don't stay good, you do always have the entocort to take again. It is not like you are giving it up forever and consigning yourself to endless suffering if the diet doesn't work. You have a safety net.
However, you know, I think it would be perfectly understandable if you just just wanted to take a break from all of this thinking about food and diet and everything for while, and just enjoy your "remission", and try to add more foods back into your diet. And I can't think of any reason why you shouldn't. My goodness, Gloria, you have put so much time, effort , thought and work into getting better from this disease.. so much more than most of us have had to, and I think it ultimately comes down to how much more you are willing to do right now. You could just stop now and decide to continue with the entocort indefinitely or until you are ready to "take up the battle again". I am sure you are very tired of it. I know I am and I haven't been doing it a quarter as long as you have!!
Well, I've rambled on enough for tonight, and should get to bed. The rest (all 39!) of the new posts will have to wait till another time.
G'night all.... ZZZZZZ
Luv
Linda
"Be kind whenever possible. It is always possible."
The 13th Dali Lama
The 13th Dali Lama
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MaggieRedwings
- King Penguin
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irisheyes13
- Adélie Penguin
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Gloria- I wish you well in your decision regarding Entocort. It truly is a tough crossroads. I can't add anything to what has already been said by everyone. I think Linda stated what I was thinking only she said it much more eloquently than I could have.
Linda and Maggie- I'm so sorry to hear of your sisters' illness and prognosis. I will keep everyone in my thoughts and prayers.
Linda and Maggie- I'm so sorry to hear of your sisters' illness and prognosis. I will keep everyone in my thoughts and prayers.
Kelly
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Believe deep down in your heart that you are destined to do great things~ Joe Paterno
Linda,
Thank you for your thoughtful response. I'm glad that you are back on track.
I agree that you shouldn't worry about what new intolerances you might have, etc. You have a higher mission right now, taking care of your sister. I'm so sorry that you and Maggie are dealing with such sad situations. I hope your families can cope with the difficult days ahead.
I have been taking one Entocort every other day for the past week. I initially saw a slight deterioration the first days after having no Entocort, but today, Norman appeared as he's done on the other days.
Perhaps my body is adjusting to the reduced level. I'm going to try to tough it out, and see if I can do it this time with the help of Imodium, if necessary. I'm eating my basic, minimal diet - no fruit or any testing until I'm home free. I've gone without all this time; I can wait a little longer. I'll keep you posted.
Gloria
Thank you for your thoughtful response. I'm glad that you are back on track.
I agree that you shouldn't worry about what new intolerances you might have, etc. You have a higher mission right now, taking care of your sister. I'm so sorry that you and Maggie are dealing with such sad situations. I hope your families can cope with the difficult days ahead.
I have been taking one Entocort every other day for the past week. I initially saw a slight deterioration the first days after having no Entocort, but today, Norman appeared as he's done on the other days.
Perhaps my body is adjusting to the reduced level. I'm going to try to tough it out, and see if I can do it this time with the help of Imodium, if necessary. I'm eating my basic, minimal diet - no fruit or any testing until I'm home free. I've gone without all this time; I can wait a little longer. I'll keep you posted.Gloria
You never know what you can do until you have to do it.