Is it dangerous to stay on entocort too long?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Is it dangerous to stay on entocort too long?
My name is Pam and I'm new to this site (thank you for being here!). I'm 44 and got mc 16 years ago. I found out about entocort in February and was on 9 mg/day through June. It was magic--I could eat anything and felt terrific. I have to admit I went wild for the first month eating things I'd been deprived of for so long, and then I started cleaning up my diet. When I went from 9 to 6mg/day I started to get sick again. My GI doc and GP say I've been on it long enough and need to wean off because the costs will outweigh the benefits. I'm now on 3 mg/day and as sick as ever. I'm not gluten free yet (I was hoping the entocort might solve my problem and I wouldn't have to get so strict.). I'm trying to figure out if I should go back on a higher dose or focus on going gluten free as I continue weaning off the entocort. I welcome any suggestions!
Hi Pam,
Welcome to our internet family. I notice that you list caffeine and fatty foods as intolerances, but you don't have gluten listed. It would be very rare for someone with MC to be intolerant of caffeine, despite what most medical "experts" claim. (For one thing, one can only be intolerant of proteins - caffeine is an alkaloid). Most of us use caffeine however we prefer, (IOW, if it didn't bother us prior to the onset of MC, then it's typically not a problem now. If it caused problems for us prior to the onset of MC, then we continue to avoid it. Once you control the inflammation caused by MC, fatty foods will no longer be a problem. Inflamed intestines cannot absorb fat.
The question about the long-term use of Entocort seems to come up on this board about once every week or so. Basically, unless you are allergic to, or intolerant of, Entocort, there is no valid reason why you cannot take it indefinitely, (at reduced doses). However, long-term use at full dosage rates is not advisable. Due to the enteric coating on Entocort EC, only 10 to 15% of the active ingredient in Entocort EC, (budesonide), is absorbed into the bloodstream. Therefore, compared with the other corticosteroids, Entocort carries only about a 10 to 15% risk of causing side effects. At reduced doses, (maintenance doses), that is probably a negligible concern. At full rates, however, it may prove to be significant, (in terms of the risk of adrenal damage, osteoporosis, etc.), over a long-term period of many years. Most doctors don't understand the significance of the effect of the enteric coating, and so they overestimate the risks involved with long-term use of Entocort.
The combined experience of many members here on this board, suggests that Entocort can probably be used at full strength for a few years, with little risk. Beyond that, we don't know. We do know that it can be safely used for many, many years, at low rates, (such as 3mg per day, or every other day, etc.).
We all have our own unique threshold level for food intolerances, at which reactions are triggered, due to differences in sensitivity levels. For some people, Entocort can enable them to eat whatever they please, so long as they take a necessary amount of Entocort each day, (whether it be 9mg, or 3mg, or less - whatever their minimum required maintenance dose happens to be). Others find that Entocort will not control their symptoms, (at any dosage rate), unless they modify their diet, also.
Be aware that no corticosteroid, (nor any other med), will totally prevent inflammation, unless the food intolerances are completely removed from the diet. IOW, the increased risk of non-Hodgkins lymphoma, so common with celiac disease, is always present, as long as inflammation remains. Obviously, the added risk should be reduced, if the total area of inflammation is reduced, (by using Entocort, for example), but some degree of increased risk remains, so long as the inflammation is continued, (by eating foods that cause inflammation).
All of this is irrelevant, however, if neither of your doctors will continue to write you a prescription for Entocort. If you wish to continue to take Entocort, you will apparently have to change doctors, because you will not be likely to change their minds by presenting them with empirical evidence from this discussion board.
Everyone has to make their own choices about their treatment plan, of course. The diet is the safest choice, obviously, since there are no significant health risks. Drugs always carry risks, and always cause side effects, though obviously, some are much less of a problem than others. You have a lot of your life ahead of you, so I would hope that you would make your health choices with your best interests in mind, so as to minimize problems and regrets down the road. As long as you have been suffering from this disease, you have probably accrued a lot of intestinal damage.
You see, the basic problem is that most GI docs are confused - they actually believe that they can prescribe something like Entocort to a patient for a couple of months, and then discontinue it, and the patient will be cured. Sadly, that almost never works, because there is no cure for MC. Once the genes are triggered, the disease is always there. That means that treatment is forever, for most of us.
IMO, (and remember - I am not a doctor), the fact that Entocort will not control your symptoms at anything less than a full dose, suggests that you have little choice but to control your symptoms by diet. You can either totally avoid all traces of your intolerances from your diet, and possibly not need any meds at all, or you can remove all but small traces of your intolerances from your diet, and use a small maintenance dose of Entocort for the rest of your life, (provided your doctor is willing to prescribe a maintenance dose). I really don't believe that it would be safe to use Entocort at full dosage rates, for the rest of your life, (just considering the osteoporosis risks, without even considering any other risks that might be applicable). All the other drug options are either less effective, or much riskier, for long-term use.
Were you ever able to achieve remission before you tried Entocort?
I hope you can find the answers that you are seeking, here. Again, welcome aboard.
Tex (Wayne)
Welcome to our internet family. I notice that you list caffeine and fatty foods as intolerances, but you don't have gluten listed. It would be very rare for someone with MC to be intolerant of caffeine, despite what most medical "experts" claim. (For one thing, one can only be intolerant of proteins - caffeine is an alkaloid). Most of us use caffeine however we prefer, (IOW, if it didn't bother us prior to the onset of MC, then it's typically not a problem now. If it caused problems for us prior to the onset of MC, then we continue to avoid it. Once you control the inflammation caused by MC, fatty foods will no longer be a problem. Inflamed intestines cannot absorb fat.
The question about the long-term use of Entocort seems to come up on this board about once every week or so. Basically, unless you are allergic to, or intolerant of, Entocort, there is no valid reason why you cannot take it indefinitely, (at reduced doses). However, long-term use at full dosage rates is not advisable. Due to the enteric coating on Entocort EC, only 10 to 15% of the active ingredient in Entocort EC, (budesonide), is absorbed into the bloodstream. Therefore, compared with the other corticosteroids, Entocort carries only about a 10 to 15% risk of causing side effects. At reduced doses, (maintenance doses), that is probably a negligible concern. At full rates, however, it may prove to be significant, (in terms of the risk of adrenal damage, osteoporosis, etc.), over a long-term period of many years. Most doctors don't understand the significance of the effect of the enteric coating, and so they overestimate the risks involved with long-term use of Entocort.
The combined experience of many members here on this board, suggests that Entocort can probably be used at full strength for a few years, with little risk. Beyond that, we don't know. We do know that it can be safely used for many, many years, at low rates, (such as 3mg per day, or every other day, etc.).
We all have our own unique threshold level for food intolerances, at which reactions are triggered, due to differences in sensitivity levels. For some people, Entocort can enable them to eat whatever they please, so long as they take a necessary amount of Entocort each day, (whether it be 9mg, or 3mg, or less - whatever their minimum required maintenance dose happens to be). Others find that Entocort will not control their symptoms, (at any dosage rate), unless they modify their diet, also.
Be aware that no corticosteroid, (nor any other med), will totally prevent inflammation, unless the food intolerances are completely removed from the diet. IOW, the increased risk of non-Hodgkins lymphoma, so common with celiac disease, is always present, as long as inflammation remains. Obviously, the added risk should be reduced, if the total area of inflammation is reduced, (by using Entocort, for example), but some degree of increased risk remains, so long as the inflammation is continued, (by eating foods that cause inflammation).
All of this is irrelevant, however, if neither of your doctors will continue to write you a prescription for Entocort. If you wish to continue to take Entocort, you will apparently have to change doctors, because you will not be likely to change their minds by presenting them with empirical evidence from this discussion board.
Everyone has to make their own choices about their treatment plan, of course. The diet is the safest choice, obviously, since there are no significant health risks. Drugs always carry risks, and always cause side effects, though obviously, some are much less of a problem than others. You have a lot of your life ahead of you, so I would hope that you would make your health choices with your best interests in mind, so as to minimize problems and regrets down the road. As long as you have been suffering from this disease, you have probably accrued a lot of intestinal damage.
You see, the basic problem is that most GI docs are confused - they actually believe that they can prescribe something like Entocort to a patient for a couple of months, and then discontinue it, and the patient will be cured. Sadly, that almost never works, because there is no cure for MC. Once the genes are triggered, the disease is always there. That means that treatment is forever, for most of us.
IMO, (and remember - I am not a doctor), the fact that Entocort will not control your symptoms at anything less than a full dose, suggests that you have little choice but to control your symptoms by diet. You can either totally avoid all traces of your intolerances from your diet, and possibly not need any meds at all, or you can remove all but small traces of your intolerances from your diet, and use a small maintenance dose of Entocort for the rest of your life, (provided your doctor is willing to prescribe a maintenance dose). I really don't believe that it would be safe to use Entocort at full dosage rates, for the rest of your life, (just considering the osteoporosis risks, without even considering any other risks that might be applicable). All the other drug options are either less effective, or much riskier, for long-term use.
Were you ever able to achieve remission before you tried Entocort?
I hope you can find the answers that you are seeking, here. Again, welcome aboard.
Tex (Wayne)
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.
-
RUBYREDDOG
- Adélie Penguin
- Posts: 158
- Joined: Tue Jun 10, 2008 4:45 pm
- Location: Glendale, Ca.
Hi pam,
A huge welcome to this board. I can't even imagine suffering with MC for 16 years. No wonder you went "wild" with your food choices after taking Entocort.
First off, I agree with everything Tex said in his post. There is so much to learn about this terrible disease. You will find so much valuable information here. Take some time to browse the topics regarding Entocort but always remember that you can, and should, ask all the questions you like.
I am assuming that you were diagnosed with MC through a biopsy??? Many of us have been tested by Interolab, to determine our intolerances. Briefly, this is done through a stool sample buy a lab started by Dr. Fine. (a G.I. doctor who also has MC) The tests are not cheap, $300 to $500 depending on which ones you choose to have done. And your insurance probably won't cover the costs. But if you can afford them, it is nice to know exactly what your intolerances are. (he only tests for the most common intolerances) Check out his web site www.enterolab.com
In the mean time you can still eliminate Gluten and dairy, the most common intolerances , from your diet if you choose to start an elimination diet. Many of us find that an elimination diet/Entocort program works the best to achieve remission. It takes a few months to a few years to achieve this goal as we are all different. So settle in and buckle up and I think you will find all the answers you seek at this site. Good luck!!!!
Hotrod
A huge welcome to this board. I can't even imagine suffering with MC for 16 years. No wonder you went "wild" with your food choices after taking Entocort.
First off, I agree with everything Tex said in his post. There is so much to learn about this terrible disease. You will find so much valuable information here. Take some time to browse the topics regarding Entocort but always remember that you can, and should, ask all the questions you like.
I am assuming that you were diagnosed with MC through a biopsy??? Many of us have been tested by Interolab, to determine our intolerances. Briefly, this is done through a stool sample buy a lab started by Dr. Fine. (a G.I. doctor who also has MC) The tests are not cheap, $300 to $500 depending on which ones you choose to have done. And your insurance probably won't cover the costs. But if you can afford them, it is nice to know exactly what your intolerances are. (he only tests for the most common intolerances) Check out his web site www.enterolab.com
In the mean time you can still eliminate Gluten and dairy, the most common intolerances , from your diet if you choose to start an elimination diet. Many of us find that an elimination diet/Entocort program works the best to achieve remission. It takes a few months to a few years to achieve this goal as we are all different. So settle in and buckle up and I think you will find all the answers you seek at this site. Good luck!!!!
Hotrod
WELCOME PAMSTER!! 
I agree with Tex and Hotrod and will add my own two cents. I have been taking Entocort for two years and am presently on 3 mg. per day. I hope to eventually get off of it completely, but until then, it has allowed me to resume living a normal life. For some, it's relatively easy to determine which foods are irritating the colon, but for others it can take a while. We don't really know until we get our symptoms under control enough that we aren't having D all the time. You have to have some success before you can determine what works. After changing my diet (based upon the Enterolab test results), I was able to reduce to 6 mg of Entocort per day after about 4 months. It took another 8 months to determine my next major food intolerance, legumes. A year later, I'm still figuring out my last few problems. I rarely have major D now and I usually make just one trip to the bathroom per day.
There are degrees of improvement with this disease. How quickly we go through those degrees depends upon how closely we adhere to a simple diet and how many intolerances we have to eliminate.
You wrote:
You will get better, but you may need to find another doctor who understands that it takes a while to get control over this disease and Entocort helps to manage it while you're learning.
Please don't hesitate to ask questions. Chances are, we've been there, done that and can help you.
Gloria
I agree with Tex and Hotrod and will add my own two cents. I have been taking Entocort for two years and am presently on 3 mg. per day. I hope to eventually get off of it completely, but until then, it has allowed me to resume living a normal life. For some, it's relatively easy to determine which foods are irritating the colon, but for others it can take a while. We don't really know until we get our symptoms under control enough that we aren't having D all the time. You have to have some success before you can determine what works. After changing my diet (based upon the Enterolab test results), I was able to reduce to 6 mg of Entocort per day after about 4 months. It took another 8 months to determine my next major food intolerance, legumes. A year later, I'm still figuring out my last few problems. I rarely have major D now and I usually make just one trip to the bathroom per day.
There are degrees of improvement with this disease. How quickly we go through those degrees depends upon how closely we adhere to a simple diet and how many intolerances we have to eliminate.
You wrote:
Trust me - we've all done that. It's human nature to think that once our symptoms disappear, we're "cured" and we can resume eating anything we want. Unfortunately, it usually doesn't take very long for our body to react again once Entocort is reduced or eliminated, especially if we don't refrain from eating those foods that irritate our colon.It was magic--I could eat anything and felt terrific. I have to admit I went wild for the first month eating things I'd been deprived of for so long, and then I started cleaning up my diet.
You will get better, but you may need to find another doctor who understands that it takes a while to get control over this disease and Entocort helps to manage it while you're learning.
Please don't hesitate to ask questions. Chances are, we've been there, done that and can help you.
Gloria
You never know what you can do until you have to do it.
finally here I find my answer on entocort (or bodenufalk, by the way are those two exactly the same medicine only with a different brand name the active component is the same in both budesonide). My main worries were about the possible side effect. Reading that only 10 till 15% of the active component reach my bloodstream is good news. Also being on a low doses make possible side effects even more unlikely. I have been back to my pharmacy and asked the pharmacist about this. What the difference was between these pills and regular corticosteroids. Actually she looked up some things in the computer, but when I left I didn't no much more than when I entered the place. I also have a question (another one). What is the best moment to take the pill. I know best moment is, early in the morning before breakfast. But just before breakfast like 5 minutes or 15 minutes. Now I take my pill about 30 till 45 minutes before breakfast, so the whole way is free for the pill, no food in the way or quick behind it. But is there any good, better of best time?
Hi Harma,
Some web sites recommend taking Entocort first thing in the morning, some recommend taking it at night, just before going to bed, and some recommend taking it in 3 doses, at regular times during the day. The main thing is to take it at about the same time, (or times), each day, so that your body's cortisol levels will be consistent, day by day. Here is what the maker recommends, for taking Budenofalk, however:
Posology:
Adults aged> 18 years:
The recommended daily dose is one capsule (containing 3 mg budesonide) three times daily (morning, midday and evening) about a half hour before meals.
Children:
Budenofalk 3 mg should not be taken by children due to insufficient experience in this age group.
Method of Administration:
The capsules containing the gastro-resistant granules should be taken before meals, swallowed whole with plenty of fluid (e.g. a glass of water).
Entocort EC and Budenofalk are very similar, but not identical. The difference is only in the inactive ingredients. Here is what is in Entocort EC capsules:
Each capsule contains 3 mg of micronized budesonide, with the following inactive ingredients:
ethylcellulose, acetyltributyl citrate, methacrylic acid copolymer type C, triethyl citrate, antifoam M, polysorbate 80, talc, and sugar spheres. The capsule shells have the following inactive ingredients: gelatin, iron oxide, and titanium dioxide.
And here is what is in Budenofalk:
Each capsule contains 3 mg budesonide, with the following inactive ingredients:
240mg Sucrose, 12mg Lactose Monohydrate, Maize starch, Methacrylic acid, methylmethacrylate copolymer (1:1) (Eudragit L 100), Methacrylic acid, methylmethacrylate copolymer (1:2) (Eudragit S 100), Poly(ethylacrylate, methylmethacrylate, trimethylammonium ethylmethacrylate chloride) (1:2:0.2) (solution with 12.5 percent Eudragit RL 12.5), Poly(ethylacrylic acid, methylmethacrylate, trimethylammonium ethylmethacrylate chloride) (1:2:0.1) (dispersion with 12.5 percent Eudragit RS 12.5), Povidone K25, Purified water*, Talc, Triethyl citrate. The capsule shells have the following inactive ingredients:
Black iron oxide (E 172), Erythrosine (E 127), Gelatin, Purified water, Red iron oxide (E 172), Sodium Laurilsulphate, Titanium dioxide (E 171)
In the U.S. we call "maize starch", "corn starch". Budenfalk also contains an ingredient derived from milk, (Lactose Monohydrate), whereas Entocort EC does not contain any dairy derivatives. The ingredients that I have highlighted in red, are the components of the enteric coating that is used to delay activation until the capsules reach the lower third of the small intestine, and the colon. Those ingredients, (or very similar ones), are in Entocort EC, also, but for some reason, they are never included with the ingredient listings. The eMC site, listing the Budenofalk data, has a much more detailed, (and much more accurate), description of the product. Here is the site where I got all the information on Budenofalk:
http://emc.medicines.org.uk/medicine/16 ... +capsules/
Any knowledgeable student of the GI tract, knows that all forms of GI inflammation, (including all the IBDs), cause lactose intolerance. I find it very strange, (actually, very stupid), that the major pharmaceutical companies continue to use ingredients containing lactose, in so many expensive medications, that are specifically designed to treat the IBDs. Why do they put lactose in there? It is totally unnecessary, and it should never be included in a medication used for treating intestinal inflammation. I can't figure out if they are trying to make sure that most patients never get complete relief, or if they are just plain stupid, but they obviously don't realize what they are doing, (or don't care). Sorry to get side-tracked on that, but such stupidity, involving such expensive drugs, really bugs me.
I hope this is what you are looking for. If not, let me know, and I will research a little further.
Tex
Some web sites recommend taking Entocort first thing in the morning, some recommend taking it at night, just before going to bed, and some recommend taking it in 3 doses, at regular times during the day. The main thing is to take it at about the same time, (or times), each day, so that your body's cortisol levels will be consistent, day by day. Here is what the maker recommends, for taking Budenofalk, however:
Posology:
Adults aged> 18 years:
The recommended daily dose is one capsule (containing 3 mg budesonide) three times daily (morning, midday and evening) about a half hour before meals.
Children:
Budenofalk 3 mg should not be taken by children due to insufficient experience in this age group.
Method of Administration:
The capsules containing the gastro-resistant granules should be taken before meals, swallowed whole with plenty of fluid (e.g. a glass of water).
Entocort EC and Budenofalk are very similar, but not identical. The difference is only in the inactive ingredients. Here is what is in Entocort EC capsules:
Each capsule contains 3 mg of micronized budesonide, with the following inactive ingredients:
ethylcellulose, acetyltributyl citrate, methacrylic acid copolymer type C, triethyl citrate, antifoam M, polysorbate 80, talc, and sugar spheres. The capsule shells have the following inactive ingredients: gelatin, iron oxide, and titanium dioxide.
And here is what is in Budenofalk:
Each capsule contains 3 mg budesonide, with the following inactive ingredients:
240mg Sucrose, 12mg Lactose Monohydrate, Maize starch, Methacrylic acid, methylmethacrylate copolymer (1:1) (Eudragit L 100), Methacrylic acid, methylmethacrylate copolymer (1:2) (Eudragit S 100), Poly(ethylacrylate, methylmethacrylate, trimethylammonium ethylmethacrylate chloride) (1:2:0.2) (solution with 12.5 percent Eudragit RL 12.5), Poly(ethylacrylic acid, methylmethacrylate, trimethylammonium ethylmethacrylate chloride) (1:2:0.1) (dispersion with 12.5 percent Eudragit RS 12.5), Povidone K25, Purified water*, Talc, Triethyl citrate. The capsule shells have the following inactive ingredients:
Black iron oxide (E 172), Erythrosine (E 127), Gelatin, Purified water, Red iron oxide (E 172), Sodium Laurilsulphate, Titanium dioxide (E 171)
In the U.S. we call "maize starch", "corn starch". Budenfalk also contains an ingredient derived from milk, (Lactose Monohydrate), whereas Entocort EC does not contain any dairy derivatives. The ingredients that I have highlighted in red, are the components of the enteric coating that is used to delay activation until the capsules reach the lower third of the small intestine, and the colon. Those ingredients, (or very similar ones), are in Entocort EC, also, but for some reason, they are never included with the ingredient listings. The eMC site, listing the Budenofalk data, has a much more detailed, (and much more accurate), description of the product. Here is the site where I got all the information on Budenofalk:
http://emc.medicines.org.uk/medicine/16 ... +capsules/
Any knowledgeable student of the GI tract, knows that all forms of GI inflammation, (including all the IBDs), cause lactose intolerance. I find it very strange, (actually, very stupid), that the major pharmaceutical companies continue to use ingredients containing lactose, in so many expensive medications, that are specifically designed to treat the IBDs. Why do they put lactose in there? It is totally unnecessary, and it should never be included in a medication used for treating intestinal inflammation. I can't figure out if they are trying to make sure that most patients never get complete relief, or if they are just plain stupid, but they obviously don't realize what they are doing, (or don't care). Sorry to get side-tracked on that, but such stupidity, involving such expensive drugs, really bugs me.
I hope this is what you are looking for. If not, let me know, and I will research a little further.
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.
Dear Pam
You have already got lots of good advice. I do hope your DRs do not rush things to quickly.
We all have similar worries and stories to share here.
For me Diet and Entocort combined seems to work. But it takes time. I will have to face my GI in a couple of months and I hope he does not reduce my Entocort before I am ready......
All the best and again welcome, Ant
Tex, maybe we should send some emails / letters to the makers of Budenofalk and ask them to explain why they use Lactose Monohydrate.
Tex and Harma, although Budenofalk seems to be not quite as good as Entocort, I would think it is still much better than other pills that might have been prescribed.
You have already got lots of good advice. I do hope your DRs do not rush things to quickly. We all have similar worries and stories to share here.
For me Diet and Entocort combined seems to work. But it takes time. I will have to face my GI in a couple of months and I hope he does not reduce my Entocort before I am ready......All the best and again welcome, Ant
Tex, maybe we should send some emails / letters to the makers of Budenofalk and ask them to explain why they use Lactose Monohydrate.
Tex and Harma, although Budenofalk seems to be not quite as good as Entocort, I would think it is still much better than other pills that might have been prescribed.
Ant,
Remember that pharmaceutical grade lactose is pure, so even thought the tiny amount of lactose in those capsules might not digest properly, it should not cause any inflammation, so theoretically, at least, it shouldn't be a "big deal", just a slight "inconvenience", (as some GI docs describe the D we get with MC.
)
Tex
Remember that pharmaceutical grade lactose is pure, so even thought the tiny amount of lactose in those capsules might not digest properly, it should not cause any inflammation, so theoretically, at least, it shouldn't be a "big deal", just a slight "inconvenience", (as some GI docs describe the D we get with MC.
)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.
It was already a couple of days ago, but Tex thanks very much for the link with the information on bedusonide or budenofalk(if I spell it correct). I had been reading a lot already on internet on this medicine, but this information was the most useful. Knowing only 10 till 15% only reach my bloodstream and since I am only the lowest doses, I feel much more relaxed taking this pills and less afraid of the side effect. I almost start to appreciate my rotpillen. There are working still very well. I am also of gluten again since yesterday and eat no diary anymore. Gluten is no problem, but the milk. I miss my cappuccino. Since today I have the idea I start to feel better, more energy, less headache. More a clear head. So, so far so good.