entocort weight gain
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entocort weight gain
I've gained 15 lbs on entocort and none of my clothes fit anymore! Is anyone else having this side effect? Doc insists it's not from entocort, but it IS a steroid, therefore I believe it is causing this rapid weight gain! I try to take one only every 2 to 3 days to try to slow down the weight gain, but I'm still gaining and still have D! He says i'll need to stay on it for life. Is this true? Should I take 2 a day till the D stops and try to taper down? Are any other drugs effective with fewer side effects? any advice is appreciated. I've had constant watery D for 2 years now with constant belching and stomach pain, discomfort. thanks
Suede. We're glad you found us. I'm sure Tex will be along soon to answer your questions.In the meantime, read as much as you can here and at www.enterolab.com
There is a site search (not the Google search) that may be helpful in researching Entocort.
There is a site search (not the Google search) that may be helpful in researching Entocort.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi Suede, and welcome!
I don't understand why your doctor insists that your weight gain could not come from Entocort, because weight gain is a very common side effect of budesonide, (the active ingredient in Entocort EC), and it's a well-documented side effect. At least he's knowledgeable enough about MC that he recognizes that controlling the symptoms is a lifelong commitment, (a lot of GI docs still think that they can treat it for about 8 weeks, and call it cured).
If you don't want to take Entocort, (or any other anti-inflammatory med), for the rest of your life, the only other known way to control the symptoms of MC is by diet, (though most doctors are totally clueless about this approach). Most of us here are able to remain in remission by eliminating all sources of gluten and casein from our diets. Gluten is a protein fraction found in wheat, and casein is the main protein in milk, and other dairy products. The main prolamin protein in barley, (hordein), and the equivalent protein in rye, (secalin), must also be avoided. (Technically, the term "gluten" is specific to wheat, but in common use, it is usually incorrectly also applied to hordein and secalin, since they seem to affect us almost as severely as gluten). Some of us are also sensitive to avenin, the equivalent prolamin in oats,and some of us also have to exclude all sources of soy from our diets, and a few other things, at least until our gut has sufficient time to heal, so that it loses it's hypersensitivity. We are all different, and we each have to work out a treatment plan that works for us. We do so by comparing notes here, and sharing experiences, about what works, and what doesn't. IOW, many of us are just as gluten-sensitive as celiacs, but we always get negative test results from the standard celiac blood tests. The only tests that will detect the type of gluten sensitivity that we have, are the tests offered by Enterolab, in Dallas, (which Joan referred to, above). They are several orders of magnitude more sensitive than the blood tests, and they are extremely reliable. These tests are also useful for celics who are unable to get a valid diagnosis by means of the classic celiac tests.
If you haven't been able to achieve remission after taking budesonide for two years, a change in your treatment plan is way overdue. First off, 6 mg of Entocort daily is a maintenence dose, not a treatment dose, and you may need to increase your dosage to achieve remission. After you achieve remission, then you can start tapering the dose. But, since it hasn't worked in all this time, you are probably going to have to do what most members with difficult cases have found it necessary to do - namely, to eliminate gluten and casein from your diet. If that doesn't bring significant improvement after a couple of months, you may have to eliminate other items from your diet. Once you achieve remission, and your gut has time to heal, then you can safely taper off the Entocort, or at least down to a very, very small dose, depending on how severe your case is, and how much damage has been done to your intestines, by gluten. Note that most GI docs are still not aware of the gluten connection, and they will argue until they are blue in the face that a diet will not help to control the symptoms of MC. They are dead wrong, though, and many of us on this board are living proof of that.
If you will read some of the archives on this board, you will soon see that yes, you can indeed get your life back. Please feel free to ask any questions that come to mind, because, trust me - we've all been there, done that, and we know from experience just how debilitating this disease can be.
Again, welcome to our internet family.
Tex (Wayne)
P S You will get a lot more responses if you post on the Main Message Board, or the Discussions on Treatment Options Using Diet, and/or Medications forum. This forum that you posted in is more of an information forum, and most members rarely look here for new posts.
I don't understand why your doctor insists that your weight gain could not come from Entocort, because weight gain is a very common side effect of budesonide, (the active ingredient in Entocort EC), and it's a well-documented side effect. At least he's knowledgeable enough about MC that he recognizes that controlling the symptoms is a lifelong commitment, (a lot of GI docs still think that they can treat it for about 8 weeks, and call it cured).
If you don't want to take Entocort, (or any other anti-inflammatory med), for the rest of your life, the only other known way to control the symptoms of MC is by diet, (though most doctors are totally clueless about this approach). Most of us here are able to remain in remission by eliminating all sources of gluten and casein from our diets. Gluten is a protein fraction found in wheat, and casein is the main protein in milk, and other dairy products. The main prolamin protein in barley, (hordein), and the equivalent protein in rye, (secalin), must also be avoided. (Technically, the term "gluten" is specific to wheat, but in common use, it is usually incorrectly also applied to hordein and secalin, since they seem to affect us almost as severely as gluten). Some of us are also sensitive to avenin, the equivalent prolamin in oats,and some of us also have to exclude all sources of soy from our diets, and a few other things, at least until our gut has sufficient time to heal, so that it loses it's hypersensitivity. We are all different, and we each have to work out a treatment plan that works for us. We do so by comparing notes here, and sharing experiences, about what works, and what doesn't. IOW, many of us are just as gluten-sensitive as celiacs, but we always get negative test results from the standard celiac blood tests. The only tests that will detect the type of gluten sensitivity that we have, are the tests offered by Enterolab, in Dallas, (which Joan referred to, above). They are several orders of magnitude more sensitive than the blood tests, and they are extremely reliable. These tests are also useful for celics who are unable to get a valid diagnosis by means of the classic celiac tests.
If you haven't been able to achieve remission after taking budesonide for two years, a change in your treatment plan is way overdue. First off, 6 mg of Entocort daily is a maintenence dose, not a treatment dose, and you may need to increase your dosage to achieve remission. After you achieve remission, then you can start tapering the dose. But, since it hasn't worked in all this time, you are probably going to have to do what most members with difficult cases have found it necessary to do - namely, to eliminate gluten and casein from your diet. If that doesn't bring significant improvement after a couple of months, you may have to eliminate other items from your diet. Once you achieve remission, and your gut has time to heal, then you can safely taper off the Entocort, or at least down to a very, very small dose, depending on how severe your case is, and how much damage has been done to your intestines, by gluten. Note that most GI docs are still not aware of the gluten connection, and they will argue until they are blue in the face that a diet will not help to control the symptoms of MC. They are dead wrong, though, and many of us on this board are living proof of that.
If you will read some of the archives on this board, you will soon see that yes, you can indeed get your life back. Please feel free to ask any questions that come to mind, because, trust me - we've all been there, done that, and we know from experience just how debilitating this disease can be.
Again, welcome to our internet family.
Tex (Wayne)
P S You will get a lot more responses if you post on the Main Message Board, or the Discussions on Treatment Options Using Diet, and/or Medications forum. This forum that you posted in is more of an information forum, and most members rarely look here for new posts.
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 Suede! 
This disease can be very frustrating, can't it? I'm not sure how long you've been taking Entocort. The standard dosage is 9 mg/day until you have achieved relief from the D. Once you are no longer having D, you can taper to 6 mg/day. I was on 6 mg/day and still having occasional D. Every time I tried to reduce to 3 mg/day, the D would return. That meant that I still had additional food intolerances. Once I eliminated legumes from my diet, I finally was able to reduce to 3 mg/day. I'm currently taking 3 mg. every other day and I don't have D unless I eat one of the foods on my intolerance list. I'm hoping to eventually get off Entocort entirely in the near future.
I would recommend that you go back to taking 9 mg/day and consider eliminating all gluten from your diet. If you suspect that you have other intolerances, the testing from Enterolab will save you a lot of guesswork. If you'd prefer to determine your food intolerances on your own, you may find this list of intolerances to be helpful: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255 The most common intolerances seem to be gluten, casien (the protein in dairy) and soy. Hopefully, eliminating these foods will eliminate the D you're experiencing and you can eventually reduce the Entocort dosage.
I have actually lost weight while taking Entocort, but that's primarily due to changing my diet. I'm not sure if others here have gained weight; hopefully they will report their experiences.
I've found it helpful to keep a food diary noting what type of stools I have each day. To determine possible food intolerances, look at the foods you ate one or two days before the day you have D. When the D becomes less frequent, you should be able to see a pattern and find that the D follows after eating certain foods.
Stay in touch and please don't hesitate to ask questions. We're all here to help each other. We understand what you are going through.
Gloria
This disease can be very frustrating, can't it? I'm not sure how long you've been taking Entocort. The standard dosage is 9 mg/day until you have achieved relief from the D. Once you are no longer having D, you can taper to 6 mg/day. I was on 6 mg/day and still having occasional D. Every time I tried to reduce to 3 mg/day, the D would return. That meant that I still had additional food intolerances. Once I eliminated legumes from my diet, I finally was able to reduce to 3 mg/day. I'm currently taking 3 mg. every other day and I don't have D unless I eat one of the foods on my intolerance list. I'm hoping to eventually get off Entocort entirely in the near future.
I would recommend that you go back to taking 9 mg/day and consider eliminating all gluten from your diet. If you suspect that you have other intolerances, the testing from Enterolab will save you a lot of guesswork. If you'd prefer to determine your food intolerances on your own, you may find this list of intolerances to be helpful: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=255 The most common intolerances seem to be gluten, casien (the protein in dairy) and soy. Hopefully, eliminating these foods will eliminate the D you're experiencing and you can eventually reduce the Entocort dosage.
I have actually lost weight while taking Entocort, but that's primarily due to changing my diet. I'm not sure if others here have gained weight; hopefully they will report their experiences.
I've found it helpful to keep a food diary noting what type of stools I have each day. To determine possible food intolerances, look at the foods you ate one or two days before the day you have D. When the D becomes less frequent, you should be able to see a pattern and find that the D follows after eating certain foods.
Stay in touch and please don't hesitate to ask questions. We're all here to help each other. We understand what you are going through.
Gloria
You never know what you can do until you have to do it.
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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Welcome Suede (love that name!)
I took Entocort for more than 6 months and probably closer to a year but did not have any weight gain effects. Would probably have welcomed that instead of the very bad imbalance I got from the drug actually causing me to take a couple of falls. Do agree with Tex that from this kind of drug you could very well suffer weight gain.
Maggie
I took Entocort for more than 6 months and probably closer to a year but did not have any weight gain effects. Would probably have welcomed that instead of the very bad imbalance I got from the drug actually causing me to take a couple of falls. Do agree with Tex that from this kind of drug you could very well suffer weight gain.
Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!