This is probably a simple question...
I know Entocort just reduces the inflammation and only stopping eating the foods you are sensitive to will allow the gut to heal.
Obviously this should be the aim where possible (get off the drug and control with diet alone), but if someone were to not change their diet at all, would the Entocort continue to work?
Will Entocort become less effective over time?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Shona,
Yes, for corticosteroid-naive patients, the evidence indicates that Entocort will continue to be effective for as long as it is used, even if used at very low maintenance rates. At low rates, it appears to be relatively safe for even very long-term use (that is, there is a probability of relatively minor osteoporosis progression, but major damage is unlikely). It's not totally risk free, but it has a much, much better record than any other corticosteroid. Also, there is no question that osteoporosis is going to progress with untreated gluten-sensitivity, so if a patient is not going to change her or his diet, there is a possibility that osteoporosis will be less of a problem for someone taking Entocort, than there would be if no intervention were used (that is, if neither diet changes nor Entocort were used).
Notice that I specified "corticosteroid-naive patients". That means patients who have never taken a corticosteroid previously and then stopped taking it. IOW, that means that the current treatment regimen is their first for the drug. That may seem irrelevant, but research shows that it is actually important. Research shows that corticosteroid-naive patients tend to suffer significantly less bone density loss when using Entocort EC than patients who have used a corticosteroid previously, (or those using prednisone for the first time).
http://www.ncbi.nlm.nih.gov/pubmed/15704045
However, please be aware that every time that Entocort is discontinued and then restarted, the body apparently develops an increasing tolerance for the drug, so that each time the Entocort is restarted, it tends to take longer to take effect, and/or a larger dose may be required in order to obtain the same result). After a certain number of cycles (the number of cycles apparently varies by the individual), most patients eventually find that they are only minimally responsive to the drug (at label dosages), and after additional cycles, they may not respond at all.
Obviously, age is a consideration in this dilemma, and younger individuals will have more incentive to wean completely off the drug than older patients. Bone density is going to diminish with age, anyway, so just because osteoporosis may become more of a problem over time, does not necessarily mean that all of the increase is due to the corticosteroid.
I hope this helps,
Tex
Yes, for corticosteroid-naive patients, the evidence indicates that Entocort will continue to be effective for as long as it is used, even if used at very low maintenance rates. At low rates, it appears to be relatively safe for even very long-term use (that is, there is a probability of relatively minor osteoporosis progression, but major damage is unlikely). It's not totally risk free, but it has a much, much better record than any other corticosteroid. Also, there is no question that osteoporosis is going to progress with untreated gluten-sensitivity, so if a patient is not going to change her or his diet, there is a possibility that osteoporosis will be less of a problem for someone taking Entocort, than there would be if no intervention were used (that is, if neither diet changes nor Entocort were used).
Notice that I specified "corticosteroid-naive patients". That means patients who have never taken a corticosteroid previously and then stopped taking it. IOW, that means that the current treatment regimen is their first for the drug. That may seem irrelevant, but research shows that it is actually important. Research shows that corticosteroid-naive patients tend to suffer significantly less bone density loss when using Entocort EC than patients who have used a corticosteroid previously, (or those using prednisone for the first time).
http://www.ncbi.nlm.nih.gov/pubmed/15704045
However, please be aware that every time that Entocort is discontinued and then restarted, the body apparently develops an increasing tolerance for the drug, so that each time the Entocort is restarted, it tends to take longer to take effect, and/or a larger dose may be required in order to obtain the same result). After a certain number of cycles (the number of cycles apparently varies by the individual), most patients eventually find that they are only minimally responsive to the drug (at label dosages), and after additional cycles, they may not respond at all.
Obviously, age is a consideration in this dilemma, and younger individuals will have more incentive to wean completely off the drug than older patients. Bone density is going to diminish with age, anyway, so just because osteoporosis may become more of a problem over time, does not necessarily mean that all of the increase is due to the corticosteroid.
I hope this helps,
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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Deanna in CO
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Yes, but that would just slightly increase the risk of osteoporosis with the first use of Entocort -- it might or might not cause a reduction in the effectiveness of budesonide, but with such a short treatment regimen both times, it would probably be difficult to quantify any difference in the future effectiveness of Entocort.Deanna wrote:Tex,
This is interesting. Over the last 15 years or so, I have had two 5-day "bursts" of prednisone, in both cases for asthma. Does that mean I'm no longer "corticosteroid-naive" when it comes to Entocort?
These are sort of uncharted waters, but I'm inclined to say, "Not significantly".Deanna wrote:Would that make me less likely to respond to Entocort?
Deanna
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.
Interesting, thanks.
Quite a significant difference (3.84 to 1.04). I wonder what the avg % loss was - they mention both groups (free & dependant) in both meds had about the same loss but dont give the figure.
Also like Deanna I wonder what sort of duration/dose of (eg) pred and how long ago, would make them put someone in the exposed group rather than the naive group.
I'd like to see the figure for the exposed group on budesonide vs pred, but assume it is all roughly the same as the avg of both groups on both meds, maybe the 3.84%, based on them not making any further distinctions in the conclusion.
Man I am angry at the GI who gave my mum pred
(12.5mg for 2 weeks from Nov 2010, gradually stepping down to nothing, total course around 3 months)
The reason I ask about Entocort's effectiveness over time, is because I suspect my mum's GI will try to wean her off the drug towards the end of the year - I dont know this for sure but just trying to think ahead. I havent yet managed to convince her that going GF/DF/SF is necessary.
I guess I just wanted to know how urgent the diet changes are. If the Entocort is going to continue to work for years (provided she doesn't stop/start) at least I know we will always have that as an option even if we end up getting it from overseas.
It would be interesting to do a poll here to see the reason most people change their diet. Eg the cost of Entocort, the side effects they want to avoid, prefer not to take any meds, meds don't work for them so diet is their only option or meds dont fully work, GI stop prescribing it & they dont want to order from overseas, etc.
In cases like my mum's where someone has been talked into a diet change, they are never going to be as committed as someone who has made the decision on their own - I guess we will have to be sure she has "got it" with diet before stopping, otherwise each time the meds are stopped and the diet changes haven't been strict enough we are risking the meds working less each time she restarts.
Quite a significant difference (3.84 to 1.04). I wonder what the avg % loss was - they mention both groups (free & dependant) in both meds had about the same loss but dont give the figure.
Also like Deanna I wonder what sort of duration/dose of (eg) pred and how long ago, would make them put someone in the exposed group rather than the naive group.
I'd like to see the figure for the exposed group on budesonide vs pred, but assume it is all roughly the same as the avg of both groups on both meds, maybe the 3.84%, based on them not making any further distinctions in the conclusion.
Man I am angry at the GI who gave my mum pred
(12.5mg for 2 weeks from Nov 2010, gradually stepping down to nothing, total course around 3 months)The reason I ask about Entocort's effectiveness over time, is because I suspect my mum's GI will try to wean her off the drug towards the end of the year - I dont know this for sure but just trying to think ahead. I havent yet managed to convince her that going GF/DF/SF is necessary.
I guess I just wanted to know how urgent the diet changes are. If the Entocort is going to continue to work for years (provided she doesn't stop/start) at least I know we will always have that as an option even if we end up getting it from overseas.
It would be interesting to do a poll here to see the reason most people change their diet. Eg the cost of Entocort, the side effects they want to avoid, prefer not to take any meds, meds don't work for them so diet is their only option or meds dont fully work, GI stop prescribing it & they dont want to order from overseas, etc.
In cases like my mum's where someone has been talked into a diet change, they are never going to be as committed as someone who has made the decision on their own - I guess we will have to be sure she has "got it" with diet before stopping, otherwise each time the meds are stopped and the diet changes haven't been strict enough we are risking the meds working less each time she restarts.
Actually there were 3 groups in the study of 272 patients. One group of 98 had never received corticosteroids, so they were classified as corticosteroid naive; 83 had received corticosteroids previously, so they were considered to be corticosteroid exposed, and 90 were still using a corticosteroid treatment, so they were considered to be corticosteroid-dependent. Since the two later groups showed the same level of bone density loss, that loss was 3.84% (for both groups). The corticosteroid naive group averaged only a 1.04% bone density loss.shona wrote:Interesting, thanks.
Quite a significant difference (3.84 to 1.04). I wonder what the avg % loss was - they mention both groups (free & dependant) in both meds had about the same loss but dont give the figure.
Whether or not the diet is urgent depends primarily on the effectiveness of the Entocort. Some people find that the drug will bring them remission despite eating pretty much whatever they want. For many others, that isn't true, and in order to achieve remission, they have to modify their diet. Some severe cases find it necessary to use both treatments.shona wrote:The reason I ask about Entocort's effectiveness over time, is because I suspect my mum's GI will try to wean her off the drug towards the end of the year - I dont know this for sure but just trying to think ahead. I havent yet managed to convince her that going GF/DF/SF is necessary.
I guess I just wanted to know how urgent the diet changes are. If the Entocort is going to continue to work for years (provided she doesn't stop/start) at least I know we will always have that as an option even if we end up getting it from overseas.
Most of us really don't have a choice. If we don't change our diet, we continue to react, despite taking meds. Were it not for that sticky problem, many more would surely choose to just pop a few pills every day rather than to change their diet.shona wrote:It would be interesting to do a poll here to see the reason most people change their diet. Eg the cost of Entocort, the side effects they want to avoid, prefer not to take any meds, meds don't work for them so diet is their only option or meds dont fully work, GI stop prescribing it & they dont want to order from overseas, etc.
In cases like my mum's where someone has been talked into a diet change, they are never going to be as committed as someone who has made the decision on their own - I guess we will have to be sure she has "got it" with diet before stopping, otherwise each time the meds are stopped and the diet changes haven't been strict enough we are risking the meds working less each time she restarts.
Quite a few members choose the diet over Entocort simply because they don't care to take a drug for the rest of their life. This is especially important for younger members. In general, I believe that these considerations define the position of roughly 95% of the members.
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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Gabes-Apg
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Shona
i wrote a post 15 months ago about the MC matrix and why one thing works for one person but may not work for another
All of us are in completely different situations when you look at all these factors, there is no one protocol that is guaranteed to work, we make decisions based on our individual situation.
that is why this forum and group of people are here, there is no easy answer, there is no quick fix, the medical profession world wide is struggling to support people with conditions like this, we all figure it out by trial and error (with our fingers and toes crossed the whole way...)
i wrote a post 15 months ago about the MC matrix and why one thing works for one person but may not work for another
Add to this matrix other factors that affect the decisions we make regarding our MC Management plan; our age, marital family status; other health conditions, insurance coverage/budget, how good the GP or GI specialist is, family needs, work requirements, priorities ie career, location (differences between countries, and city versus regional)My take is because of the intricacy and complexity which is the ‘MC matrix’
MC Matrix meaning:
a) what triggers the situation to go from niggling symptoms to full blown chronic symptoms;
b) the symptoms that occur (and which ones are intense and which ones are mild)
c) the range and timings of reactions to triggers (eg polly had medical proof that she had healed and then had a flare post MRT testing some of the possible triggers became evident)
d) whether the triggers are medicine related, food related, stress related, enviro related or a cocktail of all four
e) and of course the varied management techniques to minimise symptoms and attain wellness there is no one guaranteed solution and thinking about the discussions on this site, I don’t think there is two people that have achieved reasonable control the exact same way, (ie same dosages, same eating plan, same lifestyle)
f) age of patient
g) other health conditions and treatments relating to those conditions
All of us are in completely different situations when you look at all these factors, there is no one protocol that is guaranteed to work, we make decisions based on our individual situation.
that is why this forum and group of people are here, there is no easy answer, there is no quick fix, the medical profession world wide is struggling to support people with conditions like this, we all figure it out by trial and error (with our fingers and toes crossed the whole way...)
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
thanks guys, makes sense. There is still so much research to be done.
Rather than meds working well initially then "wearing off" and symptoms returning hence the need for diet changes (I understand this can still happen especially if the meds are stop/started but it seems to be the less common occurrence than the above sentence?)
I wonder how many people out there are given Entocort early on in their diagnosis, get good results from it from the start and continue to get good results, and hence never need to search for a support forum such as this.
all these stats and groups are starting to confuse me. I read the groups to be:
- corticosteroid-free (total 181) incorporating 98 naive and 83 exposed; and
- corticosteroid-dependent (total 90).
then: "Neither the corticosteroid-free nor the corticosteroid-dependent patients treated with budesonide differed significantly in bone mineral density from those receiving prednisolone" so both main groups (ie all 3 sub groups) on both drugs had the same level of loss on average.
"corticosteroid-naive patients receiving budesonide had smaller reductions in bone mineral density than those on prednisolone (mean, -1.04% vs -3.84%; P = .0084)."
then I took this to mean of the 98 naive patients when they are split depending on which drug they were given during the study: the "naives" who were given budesonide had -1.04% compared with the "naives" who were given prednisolone who had -3.84%.
Am I reading it wrong?
So 3 groups x 2 meds = 6 combinations. I would guess the average loss for all 6 combinations would be the 3.84% except naive/budesonide (1.04) because otherwise they would have mentioned the other percentages? And the only one worth singling out from the "average" was naive/budesonide because it was so much lower than all others?
But maybe that 3.84% is only the figure for naive/prednisolone and we don't know the figure for exposed/pred, exposed/budesonide, dependent/pred or dependent/budesonide.
Now I have got myself more confused.
Thanks for your help!
If I'm reading correctly, I'd take this to mean that for many people on this board, the meds only work a little to moderate amount from the get-go & they still have issues even when first starting the meds, hence the diet changes.tex wrote:Most of us really don't have a choice. If we don't change our diet, we continue to react, despite taking meds.
Rather than meds working well initially then "wearing off" and symptoms returning hence the need for diet changes (I understand this can still happen especially if the meds are stop/started but it seems to be the less common occurrence than the above sentence?)
I wonder how many people out there are given Entocort early on in their diagnosis, get good results from it from the start and continue to get good results, and hence never need to search for a support forum such as this.
I was not born to be a doctortex wrote:Actually there were 3 groups in the study of 272 patients. One group of 98 had never received corticosteroids, so they were classified as corticosteroid naive; 83 had received corticosteroids previously, so they were considered to be corticosteroid exposed, and 90 were still using a corticosteroid treatment, so they were considered to be corticosteroid-dependent. Since the two later groups showed the same level of bone density loss, that loss was 3.84% (for both groups). The corticosteroid naive group averaged only a 1.04% bone density loss.
all these stats and groups are starting to confuse me. I read the groups to be:- corticosteroid-free (total 181) incorporating 98 naive and 83 exposed; and
- corticosteroid-dependent (total 90).
then: "Neither the corticosteroid-free nor the corticosteroid-dependent patients treated with budesonide differed significantly in bone mineral density from those receiving prednisolone" so both main groups (ie all 3 sub groups) on both drugs had the same level of loss on average.
"corticosteroid-naive patients receiving budesonide had smaller reductions in bone mineral density than those on prednisolone (mean, -1.04% vs -3.84%; P = .0084)."
then I took this to mean of the 98 naive patients when they are split depending on which drug they were given during the study: the "naives" who were given budesonide had -1.04% compared with the "naives" who were given prednisolone who had -3.84%.
Am I reading it wrong?
So 3 groups x 2 meds = 6 combinations. I would guess the average loss for all 6 combinations would be the 3.84% except naive/budesonide (1.04) because otherwise they would have mentioned the other percentages? And the only one worth singling out from the "average" was naive/budesonide because it was so much lower than all others?
But maybe that 3.84% is only the figure for naive/prednisolone and we don't know the figure for exposed/pred, exposed/budesonide, dependent/pred or dependent/budesonide.
Now I have got myself more confused.
Thanks for your help!
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Deanna in CO
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Shona,
I could be wrong about this, because I've only been on this list for a few months, but in my experience the vast majority of folks here who go on Entocort do very well initially. The problems come in when a) they take the drug for a long time (especially without diet changes)and it becomes less effective over time, or b) they try to go off it and relapse.
Deanna
I could be wrong about this, because I've only been on this list for a few months, but in my experience the vast majority of folks here who go on Entocort do very well initially. The problems come in when a) they take the drug for a long time (especially without diet changes)and it becomes less effective over time, or b) they try to go off it and relapse.
Deanna
Shona,
Here is what the results of the study show:
Corticosteroid-naivety is irrelevant for other corticosteroids, but very important for budesonide, because it not only determines the level of bone density loss, but it also establishes maximum effectiveness of the drug.
Many members are never able to reach remission on budesonide, unless they also change their diet. The drug simply can't control the inflammation as fast as it is being generated in those cases. Others taking budesonide are able to control their symptoms satisfactorily without changing their diet, but as Deanna pointed out, that efficacy can change over time, especially after they stop taking the drug and then resume taking it again after they relapse. After a few such cycles, those members may also find it necessary to alter their diet, in order to achieve remission.
Remember the main point here -- drugs suppress the symptoms by reducing the inflammation after it occurs. Diet changes prevent symptoms by preventing the inflammation from being generated in the first place. Drugs treat disease while diet changes prevent disease.
Tex
Here is what the results of the study show:
Any way you dissect the data, the only patients who experienced the lower level of bone density loss (1.04%) were the corticosteroid-naive patients who were treated with budesonide. It appears that for all practical purposes, everyone else in the study experienced a 3.84% bone density loss, regardless of the drug used.RESULTS: Neither the corticosteroid-free nor the corticosteroid-dependent patients treated with budesonide differed significantly in bone mineral density from those receiving prednisolone. However, corticosteroid-naive patients receiving budesonide had smaller reductions in bone mineral density than those on prednisolone (mean, -1.04% vs -3.84%; P = .0084). Treatment-emergent corticosteroid side effects were less frequent with budesonide. Efficacy was similar in both groups.
Corticosteroid-naivety is irrelevant for other corticosteroids, but very important for budesonide, because it not only determines the level of bone density loss, but it also establishes maximum effectiveness of the drug.
Many members are never able to reach remission on budesonide, unless they also change their diet. The drug simply can't control the inflammation as fast as it is being generated in those cases. Others taking budesonide are able to control their symptoms satisfactorily without changing their diet, but as Deanna pointed out, that efficacy can change over time, especially after they stop taking the drug and then resume taking it again after they relapse. After a few such cycles, those members may also find it necessary to alter their diet, in order to achieve remission.
Remember the main point here -- drugs suppress the symptoms by reducing the inflammation after it occurs. Diet changes prevent symptoms by preventing the inflammation from being generated in the first place. Drugs treat disease while diet changes prevent disease.
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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mzh
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I've been on Entocort since 2007. I tried to wean off it a couple of times and couldn't do it. I've since quit coffee, popcorn and lessened my nut intake but I'm hesitant to go off it again b/c maybe it won't work as well the next time.
At one point I could take 1 pill every three days. Now I seem to need one a day b/c things get loose on one every other day. I'm 68 so I figure I'll just take it the rest of my life -- unless the L-Glut regimen actually works. Been on that since only since about the third week of March so a few more months of this will be needed.
At one point I could take 1 pill every three days. Now I seem to need one a day b/c things get loose on one every other day. I'm 68 so I figure I'll just take it the rest of my life -- unless the L-Glut regimen actually works. Been on that since only since about the third week of March so a few more months of this will be needed.
Also have sleep apnea
Shona,
What's your daily dose of L-Glutamine? I've just switched to 3mg of entocort every other day this week and I'm having increased issues with watery D. I also started taking L-glutamine but I'm having more nausea issues and not sure if that's the cause. The directions say to take 2/500mg tablets 4x a day on an empty stomach. Is this the recommended dose for those with MC? Of course, I wanted to feel immediate results but actually feel a bit worse than before. Bad timing on my part since I don't know if I should blame the reduced amount of entorcort in my system.
What's your daily dose of L-Glutamine? I've just switched to 3mg of entocort every other day this week and I'm having increased issues with watery D. I also started taking L-glutamine but I'm having more nausea issues and not sure if that's the cause. The directions say to take 2/500mg tablets 4x a day on an empty stomach. Is this the recommended dose for those with MC? Of course, I wanted to feel immediate results but actually feel a bit worse than before. Bad timing on my part since I don't know if I should blame the reduced amount of entorcort in my system.
Hi Deb,
I'm intruding on your thread a bit. I've been taking approx 1 heaping tsp of L Glut mixed in water 3 x per day. I've been getting the powder that the body builders get. I believe this is approx. the regimen that Connie recommends (Stanz).
Also perhaps if you decide not to kick back up on ento perhaps go 1 pill, 1/2 pill (pour a little out) 1 pill, etc for awhile but ultimately you have to be the judge. Maybe that will stabilize things?
The low end on Ento seems really touchy.
Best wishes, Brandy
I'm intruding on your thread a bit. I've been taking approx 1 heaping tsp of L Glut mixed in water 3 x per day. I've been getting the powder that the body builders get. I believe this is approx. the regimen that Connie recommends (Stanz).
Also perhaps if you decide not to kick back up on ento perhaps go 1 pill, 1/2 pill (pour a little out) 1 pill, etc for awhile but ultimately you have to be the judge. Maybe that will stabilize things?
The low end on Ento seems really touchy.
Best wishes, Brandy
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Christine.
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I took L Glutamine for about a month and I didn't think there were any particular benefits. Did I give up too early? Since I am on an even keel as long as I stay e/f, d/f, g/f and s/f without meds, is L Glutamine of any benefit?
I will say I have tried a little egg and a little ghee and all you-know-what broke loose so I'm on the straight and narrow for now. I'm saving Endocort for when I'm in the home like my mom was for years. They will want to medicate me when they don't offer my customized diet.
How goofy is that thought?
Chris
I will say I have tried a little egg and a little ghee and all you-know-what broke loose so I'm on the straight and narrow for now. I'm saving Endocort for when I'm in the home like my mom was for years. They will want to medicate me when they don't offer my customized diet.
How goofy is that thought?
Chris