For the second time I have tried to cut back from 3 capsules/day to 2 - both resulting in the D coming back : ( I've been on it for about 3 months. Would you continue trying to wean off it and see continue cutting out foods (I'm already Gluten Free) or would you go back top 3/day and give it more time to heal?
My Dr. will probably recommend increasing the dosage again - but I wonder if I am putting off the inevitable in determining what is causing the inflammation.
Any thoughts?
What would you do? Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
I believe that most of us here are in agreement that it's generally best to go back to 3 capsules per day, in order to get the symptoms under control, (getting the symptoms under control, as soon as possible, is always the first priority), and then remove additional suspect foods, before attempting to reduce the dosage again. Typically, it takes from 6 months to a year of Entocort treatment before the dose can be safely reduced, as a general rule. Healing is slow, with MC. Almost everyone who tries to reduce the dosage sooner, has a relapse of symptoms, and has to increase the dose again.
If you are only avoiding gluten, the odds are very high that you will need to remove all dairy products from your diet, in order to control your symptoms by diet alone. About half of us are sensitive to soy, so if you are still having problems after avoiding dairy for a while, the next thing to remove from your diet would be soy. Continue to avoid all gluten, and diary products, though, when you remove soy from your diet, because soy intolerance is virtually always in addition to, (not in place of), gluten and dairy sensitivity.
It's true that the Entocort will mask the cause of your inflammation, but since it usually takes the gut at least 6 months to a year to heal, the Entocort can prevent a lot of misery, while the gut is healing. If I were in your shoes, I would probably up the dosage again, remove all dairy products from my diet, and after a few weeks or so of remission, I would try to reduce the dose again. If that fails, I would increase the dose again, remove soy from my diet, and after a few weeks or so of remission, I would try to reduce the dose again. If it still doesn't work, I would increase the dose again, and wait at least 3 or 4 months, before trying to reduce the dose again.
Good luck,
Tex
I believe that most of us here are in agreement that it's generally best to go back to 3 capsules per day, in order to get the symptoms under control, (getting the symptoms under control, as soon as possible, is always the first priority), and then remove additional suspect foods, before attempting to reduce the dosage again. Typically, it takes from 6 months to a year of Entocort treatment before the dose can be safely reduced, as a general rule. Healing is slow, with MC. Almost everyone who tries to reduce the dosage sooner, has a relapse of symptoms, and has to increase the dose again.
If you are only avoiding gluten, the odds are very high that you will need to remove all dairy products from your diet, in order to control your symptoms by diet alone. About half of us are sensitive to soy, so if you are still having problems after avoiding dairy for a while, the next thing to remove from your diet would be soy. Continue to avoid all gluten, and diary products, though, when you remove soy from your diet, because soy intolerance is virtually always in addition to, (not in place of), gluten and dairy sensitivity.
It's true that the Entocort will mask the cause of your inflammation, but since it usually takes the gut at least 6 months to a year to heal, the Entocort can prevent a lot of misery, while the gut is healing. If I were in your shoes, I would probably up the dosage again, remove all dairy products from my diet, and after a few weeks or so of remission, I would try to reduce the dose again. If that fails, I would increase the dose again, remove soy from my diet, and after a few weeks or so of remission, I would try to reduce the dose again. If it still doesn't work, I would increase the dose again, and wait at least 3 or 4 months, before trying to reduce the dose again.
Good luck,
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.
Welcome to the board!! 
I agree with Tex.
Entocort is not healing you; it's suppressing your reactions. If your goal is to ultimately get off Entocort, or even to reduce the dosage, you must get rid of the cause of your inflammation. It is difficult to determine what is causing your inflammation when you are having D every day. Entocort allows you to keep the D under control (and live a normal life) while you eliminate foods in order to begin the healing process. Once you have eliminated the major food problems and are having D only occasionally, you should be able to fine-tune your diet and achieve total remission without medication.
For some people, it's relatively easy to determine their food intolerances. For others with multiple intolerances, it can take a long time. It may be helpful to look at a list of food intolerances shared amongst those on the board: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255
Some here have chosen an elimination diet to kick-start their remission. This diet begins with a small set of acceptable foods and adds new ones as tolerated. Others have chosen to follow a Paleo diet. You'll find a description of each of these types of diets here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
It took a year for me to finally be able to reduce my Entocort dosage to one pill per day. I've been taking one pill per day for the past year. I'm finally at the point where I'm having just one BM per day - that's just happened in the last few weeks. That tells me that my gut is still healing after two years of being on Entocort and carefully managing my diet. I still get D occasionally and I just discovered another food intolerance a few days ago. I have many intolerances and my case is more difficult than the average; you will probably be different.
Good luck and please don't hesitate to ask questions. We are here to help you.
Gloria
I agree with Tex.
Entocort is not healing you; it's suppressing your reactions. If your goal is to ultimately get off Entocort, or even to reduce the dosage, you must get rid of the cause of your inflammation. It is difficult to determine what is causing your inflammation when you are having D every day. Entocort allows you to keep the D under control (and live a normal life) while you eliminate foods in order to begin the healing process. Once you have eliminated the major food problems and are having D only occasionally, you should be able to fine-tune your diet and achieve total remission without medication.
For some people, it's relatively easy to determine their food intolerances. For others with multiple intolerances, it can take a long time. It may be helpful to look at a list of food intolerances shared amongst those on the board: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255
Some here have chosen an elimination diet to kick-start their remission. This diet begins with a small set of acceptable foods and adds new ones as tolerated. Others have chosen to follow a Paleo diet. You'll find a description of each of these types of diets here: http://www.perskyfarms.com/phpBB2/viewforum.php?f=6
It took a year for me to finally be able to reduce my Entocort dosage to one pill per day. I've been taking one pill per day for the past year. I'm finally at the point where I'm having just one BM per day - that's just happened in the last few weeks. That tells me that my gut is still healing after two years of being on Entocort and carefully managing my diet. I still get D occasionally and I just discovered another food intolerance a few days ago. I have many intolerances and my case is more difficult than the average; you will probably be different.
Good luck and please don't hesitate to ask questions. We are here to help you.
Gloria
You never know what you can do until you have to do it.
