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Hi there,
i am a new member and got diagnosed with lymphocytic colitis a month or so ago after having chronic diarrhea for 6 months or more.
anyway, my gastro put me on entocort for 8 weeks, i am just finished week 1.
have gained 3lbs and dont sleep as soundly at night
my question is he told me to take 9mgs for 8 weeks and then completely stop.
i am reading online about all these withdrawal symptoms etc so am worried that i need to lower the dose prior to stopping, is 8 weeks enough time for my body to stop making its own cortisol?
have people dont something like this before?
i am also working on my diet, i am not a fan of steroids so am dying to get off of them.
thank you,
entocort and lymphocytic colitis
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi,
Welcome aboard. No, your body won't become dependent on the Entocort in 8 weeks, because the active ingredient in Entocort, (budesonide), is encapsulated with an enteric coating, so that only about 10 to 15% of it is absorbed by the blood stream. The rest stays in the ileum and the colon, where it will do the most good. If you use it for roughly 6 months to a year, or more, though, it would be best to taper the dose. The worst part of stopping the treatment in only 8 weeks is that your symptoms will almost certainly relapse within a week or so after stopping the treatment, because it takes much longer than 8 weeks for the damage in the gut to heal. It's possible that you might be getting some control from the diet by then, but it usually takes longer than 8 weeks for the diet to have a significant effect, (again, because it takes a while for the gut to heal).
Most GI docs who haven't had much experience treating MC will only prescribe Entocort for about 8 weeks, because they don't have the foggiest idea how long it takes the gut to heal. Some of them seem to never learn a better way, while others eventually learn that patients need to use the drug for a much longer period of time, if they are to successfully control the symptoms for more than just 8 or 9 weeks. Also, most GI docs are not yet aware that the symptoms can be controlled by diet changes, so they will argue that avoiding certain foods is a waste of time. They are wrong, of course - most of the members here who have tried the diet have discovered that it usually works better than prescription drugs. In fact, for many patients, Entocort is not enough to bring remission, unless they also make some diet changes.
Again, welcome aboard, and please feel free to ask anything.
Tex
Welcome aboard. No, your body won't become dependent on the Entocort in 8 weeks, because the active ingredient in Entocort, (budesonide), is encapsulated with an enteric coating, so that only about 10 to 15% of it is absorbed by the blood stream. The rest stays in the ileum and the colon, where it will do the most good. If you use it for roughly 6 months to a year, or more, though, it would be best to taper the dose. The worst part of stopping the treatment in only 8 weeks is that your symptoms will almost certainly relapse within a week or so after stopping the treatment, because it takes much longer than 8 weeks for the damage in the gut to heal. It's possible that you might be getting some control from the diet by then, but it usually takes longer than 8 weeks for the diet to have a significant effect, (again, because it takes a while for the gut to heal).
Most GI docs who haven't had much experience treating MC will only prescribe Entocort for about 8 weeks, because they don't have the foggiest idea how long it takes the gut to heal. Some of them seem to never learn a better way, while others eventually learn that patients need to use the drug for a much longer period of time, if they are to successfully control the symptoms for more than just 8 or 9 weeks. Also, most GI docs are not yet aware that the symptoms can be controlled by diet changes, so they will argue that avoiding certain foods is a waste of time. They are wrong, of course - most of the members here who have tried the diet have discovered that it usually works better than prescription drugs. In fact, for many patients, Entocort is not enough to bring remission, unless they also make some diet changes.
Again, welcome aboard, and please feel free to ask anything.
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 Scrowley!! 
I am presently off of Entocort, but I had been on various dosages for over three years. As Tex mentioned, Entocort is not a systemic steroid. Betwee 85-90% of it stays in the gut, unlike Prednisone. I had problems sleeping with Prednisone and was jittery all the time, but I've have no similar issues with Entocort. I didn't have any withdrawl symptoms from going off of it, but I did taper it pretty slowly over the course of 3 months.
I agree with Tex that going off Entocort after only 8 weeks is not sufficient time for your gut to heal and for you to determine which foods you need to eat to control your symptoms. Your GI doesn't have a basic understanding of how Entocort and MC work if he's wanting you to get off of it within 8 weeks.
Please ask away - we are here to help you with any questions you may have.
Gloria
I am presently off of Entocort, but I had been on various dosages for over three years. As Tex mentioned, Entocort is not a systemic steroid. Betwee 85-90% of it stays in the gut, unlike Prednisone. I had problems sleeping with Prednisone and was jittery all the time, but I've have no similar issues with Entocort. I didn't have any withdrawl symptoms from going off of it, but I did taper it pretty slowly over the course of 3 months.
I agree with Tex that going off Entocort after only 8 weeks is not sufficient time for your gut to heal and for you to determine which foods you need to eat to control your symptoms. Your GI doesn't have a basic understanding of how Entocort and MC work if he's wanting you to get off of it within 8 weeks.
Please ask away - we are here to help you with any questions you may have.
Gloria
You never know what you can do until you have to do it.
thanks-entocort
Thanks alot for both of your replies, that makes me feel alot better.
i really want to get off of it fast so will not encourage my doctor to continue it.
i have made dietary changes and definitely depending on what i eat, i am better or worse.
Do you think it is a bad thing to have inflammation like this and not treat with drugs?
can it develop into something more serious if the inflammation is left the same?
Also, i am off of dairy, wheat, anything tasty, spicy, fruits, veg unless coooked very well.
i am finding that my new diet is really unhealthy but the consequences of not eating like this is worse.
what do you think of the SCD diet?
thanks.
i really want to get off of it fast so will not encourage my doctor to continue it.
i have made dietary changes and definitely depending on what i eat, i am better or worse.
Do you think it is a bad thing to have inflammation like this and not treat with drugs?
can it develop into something more serious if the inflammation is left the same?
Also, i am off of dairy, wheat, anything tasty, spicy, fruits, veg unless coooked very well.
i am finding that my new diet is really unhealthy but the consequences of not eating like this is worse.
what do you think of the SCD diet?
thanks.
Well, eventually, untreated inflammation can increase the risk of developing additional autoimmune diseases, but if you remove the offending foods from your diet, you are treating the inflammation. It takes a while for the gut to heal, but that's true no matter how you choose to treat it.
I don't understand why you feel that your diet is so unhealthy. There is nothing particularly healthy about wheat and milk. They have few natural nutrients - a lot of their nutrition is added during processing. (And there is nothing healthy about any diet that promotes chronic diarrhea, no matter how healthy the various foods might appear to be). They're only healthy if we can extract nutrients from them. True, fruits and veggies are generally nutritious, but when we are in a flare, those nutrients just go right through us, so we don't absorb much from them, anyway. The main thing is to allow the gut to heal, so that eventually you will be able to absorb nutrients, again. So for the moment, at least, any diet that will allow the gut to heal, is a "healthy" diet. After healing takes place, you'll be able to slowly add those fruits and veggies back into your diet, again.
The SCD is generally a healthy diet, but it has to be modified for most people who have MC, because most of us are sensitive to the casein in yogurt. And, of course, we have to limit our fiber, while we are healing, and the fructose in most fruits is a problem for many of us, if we consume significant amounts of it.
You're most welcome,
Tex
I don't understand why you feel that your diet is so unhealthy. There is nothing particularly healthy about wheat and milk. They have few natural nutrients - a lot of their nutrition is added during processing. (And there is nothing healthy about any diet that promotes chronic diarrhea, no matter how healthy the various foods might appear to be). They're only healthy if we can extract nutrients from them. True, fruits and veggies are generally nutritious, but when we are in a flare, those nutrients just go right through us, so we don't absorb much from them, anyway. The main thing is to allow the gut to heal, so that eventually you will be able to absorb nutrients, again. So for the moment, at least, any diet that will allow the gut to heal, is a "healthy" diet. After healing takes place, you'll be able to slowly add those fruits and veggies back into your diet, again.
The SCD is generally a healthy diet, but it has to be modified for most people who have MC, because most of us are sensitive to the casein in yogurt. And, of course, we have to limit our fiber, while we are healing, and the fructose in most fruits is a problem for many of us, if we consume significant amounts of it.
You're most 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.