I hadn't realised it had been so long since my last post, but I came on the other day and was so happy to see Tex's book in the top right corner.
I immediately ordered a copy and am half way through - one of the most well written, thoroughly researched books I have ever read - I think I'm 2 years behind the times but just wanted to say congratulations Tex & a huge thank you as well for the mountain of work it must have taken to compile all that information.
The reason I was back visiting the site was because my mum has had a relapse and I was after some help. My original post outlining the story is here but in a nutshell: she has CC and finally got put on Entocort back in mid 2012 - huge improvement since then.
Luckily her GI knows Entocort isn't a 6 week thing, so she spent a few months on 3 tablets / day, then 2, then 1 (which didn't work so she is on 2 tablets now for the foreseeable future).
About 4 weeks ago she had quite a significant relapse, everything she eats goes straight through her, watery D, etc.
1) Is it possible the Entocort may suddenly stop being effective even after consistent results for 2 years?
2) What else is likely to be going on? Her GP and the Crohns/Colitis helpline here in Australia both suggested maybe doing a stool test for parasites eg giardia.
thank you
Shona
Tex's book & few questions on relapse
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
I can sympathize, I have experienced a relapse recently and it seemed like even a drink of water would go straight thru.
There are so many things that can cause WD stress, allergy (food or otherwise), change of meds.
Others more knowledgeable will chime in. All I can suggest is going back to a few basic foods to give the system a rest.
There are so many things that can cause WD stress, allergy (food or otherwise), change of meds.
Others more knowledgeable will chime in. All I can suggest is going back to a few basic foods to give the system a rest.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Hi Shona,
Thank you for the kind words about the book. If you are only half-way through, then most of the information on innovative treatments for difficult cases still lies ahead (chapter 14 contains a lot of information on treating difficult cases).
I'm sorry to hear that your mum is suffering from a relapse. I believe that Theresa is on the right track by suspecting a food or medication problem. Did your mum by any chance begin using any new medication a month or so ago (or increase the dose of an existing treatment)? The problem with Entocort is that it can help to suppress symptoms by reducing inflammation, but it can be easily overwhelmed by a medication or food item that promotes more inflammation than the budesonide in Entocort can handle.
I don't recall whether your mum is on a gluten-free diet, but if she's not, it's possible that her anti-gliadin antibody level may have reached a level that cannot be handled by budesonide. Our antibody level continues to climb when we continue to eat a food that causes our immune system to produce antibodies. Eventually it will tend to level off at a very high level. If she is on a GF diet, then maybe her diet has somehow become cross-contaminated with gluten from an unsuspected source. This can easily happen, especially if any commercially processed foods are used, because contamination unknown to the manufacturer (or the ingredient supplier) will not be noted on the label. Most GF foods are not tested individually. They are assumed to be safe (and certified as safe by the manufacturer) based on initial or random tests of the product that may not necessarily reflect the safety (or lack thereof) of any particular batch.
Or, it's possible that her increased inflammation may be coming from some other food in her diet to which her sensitivity has increased over time, or maybe she is eating more of that food now than she did in the past.
Regarding the efficacy of Entocort: As long as a patient does not discontinue taking Entocort, it seems to remain effective. If it is discontinued and then the patient begins taking it again, it typically loses some effectiveness each time this cycle is repeated. As noted in the book, at least one research study has documented this phenomenon (which verifies the experiences of various members here on this board), and the net effect is that if the medication is withdrawn and restarted enough times, eventually it will become ineffective in many/most cases. Therefore, IMO, if there is a very good chance that a patient may need to use budesonide in the future, the key to maintaining its effectiveness is to reduce the dose to a very low level when it is not needed, rather than to stop taking it altogether. This has not been verified by research of course, but even 1 capsule every 3 to 5 days may be enough to maintain efficacy (because it takes longer than that for the body to eliminate all traces of budesonide).
That said, the long-term effectiveness of budesonide is relatively unresearched. Most manufacturer trials only run for 6 or 8 weeks, though AstraZeneca has done a few trials with Entocort that lasted for up to 6 months. So we are pretty much on our own, regarding the question of long-term use. We have members of this discussion board who have been using budesonide for many years, and as far as I am aware, it is still effective for them. So I'm inclined to believe that unless a patient repeatedly stops using it and restarts using it too many times, it should remain effective (provided that it was effective initially). That's why (like Theresa) I suspect that a medication or something in your mum's diet may be responsible for her relapse.
In the meantime, a bland diet of "safe" foods (as Theresa suggested) should help to resolve her symptoms and initiate healing. I hope that some of this is helpful. Please keep us posted.
You're very welcome,
Tex
Thank you for the kind words about the book. If you are only half-way through, then most of the information on innovative treatments for difficult cases still lies ahead (chapter 14 contains a lot of information on treating difficult cases).
I'm sorry to hear that your mum is suffering from a relapse. I believe that Theresa is on the right track by suspecting a food or medication problem. Did your mum by any chance begin using any new medication a month or so ago (or increase the dose of an existing treatment)? The problem with Entocort is that it can help to suppress symptoms by reducing inflammation, but it can be easily overwhelmed by a medication or food item that promotes more inflammation than the budesonide in Entocort can handle.
I don't recall whether your mum is on a gluten-free diet, but if she's not, it's possible that her anti-gliadin antibody level may have reached a level that cannot be handled by budesonide. Our antibody level continues to climb when we continue to eat a food that causes our immune system to produce antibodies. Eventually it will tend to level off at a very high level. If she is on a GF diet, then maybe her diet has somehow become cross-contaminated with gluten from an unsuspected source. This can easily happen, especially if any commercially processed foods are used, because contamination unknown to the manufacturer (or the ingredient supplier) will not be noted on the label. Most GF foods are not tested individually. They are assumed to be safe (and certified as safe by the manufacturer) based on initial or random tests of the product that may not necessarily reflect the safety (or lack thereof) of any particular batch.
Or, it's possible that her increased inflammation may be coming from some other food in her diet to which her sensitivity has increased over time, or maybe she is eating more of that food now than she did in the past.
Regarding the efficacy of Entocort: As long as a patient does not discontinue taking Entocort, it seems to remain effective. If it is discontinued and then the patient begins taking it again, it typically loses some effectiveness each time this cycle is repeated. As noted in the book, at least one research study has documented this phenomenon (which verifies the experiences of various members here on this board), and the net effect is that if the medication is withdrawn and restarted enough times, eventually it will become ineffective in many/most cases. Therefore, IMO, if there is a very good chance that a patient may need to use budesonide in the future, the key to maintaining its effectiveness is to reduce the dose to a very low level when it is not needed, rather than to stop taking it altogether. This has not been verified by research of course, but even 1 capsule every 3 to 5 days may be enough to maintain efficacy (because it takes longer than that for the body to eliminate all traces of budesonide).
That said, the long-term effectiveness of budesonide is relatively unresearched. Most manufacturer trials only run for 6 or 8 weeks, though AstraZeneca has done a few trials with Entocort that lasted for up to 6 months. So we are pretty much on our own, regarding the question of long-term use. We have members of this discussion board who have been using budesonide for many years, and as far as I am aware, it is still effective for them. So I'm inclined to believe that unless a patient repeatedly stops using it and restarts using it too many times, it should remain effective (provided that it was effective initially). That's why (like Theresa) I suspect that a medication or something in your mum's diet may be responsible for her relapse.
In the meantime, a bland diet of "safe" foods (as Theresa suggested) should help to resolve her symptoms and initiate healing. I hope that some of this is helpful. Please keep us posted.
You're very 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.
Shona,
Something that I forgot to include in my post regarding the effectiveness of Entocort — this is not stated in the medical literature, but one thing that I discovered when I was writing the book on vitamin D (published a little over a month ago) is that corticosteroids suppress inflammation by exploiting (enhancing) the ability of vitamin D to suppress inflammation. IOW, it appears that the active form of vitamin D might actually be responsible for most of the inflammation suppression provided by corticosteroids. Elevated mast cell numbers and or overactive mast cells are a common source of inflammation. Published research shows that corticosteroids express vitamin D receptors, thereby enhancing the ability of vitamin D to suppress mast cell numbers and activation. This suggests that if vitamin D is deficient, then corticosteroids might lose their effectiveness.
IBDs (including MC) are known to deplete vitamin D (vitamin D is used up to fight the inflammation). Therefore, it might be possible that your mum may have developed a vitamin D deficiency, and this is the reason why the Entocort is no longer effective. Note that this is my own theory based on the research that I mentioned above, so her doctor will not be aware of it, because it hasn't been proven by medical trials. Unless your mum is already taking a significant amount of vitamin D supplement (more than 5,000 IU per day, for example), then increasing her daily vitamin D supplement might allow the Entocort to begin working again. Of course if she is already taking a relatively large dose of vitamin D, then it might be a good idea to have her vitamin D level tested before increasing her supplementation dosage.
Tex
Something that I forgot to include in my post regarding the effectiveness of Entocort — this is not stated in the medical literature, but one thing that I discovered when I was writing the book on vitamin D (published a little over a month ago) is that corticosteroids suppress inflammation by exploiting (enhancing) the ability of vitamin D to suppress inflammation. IOW, it appears that the active form of vitamin D might actually be responsible for most of the inflammation suppression provided by corticosteroids. Elevated mast cell numbers and or overactive mast cells are a common source of inflammation. Published research shows that corticosteroids express vitamin D receptors, thereby enhancing the ability of vitamin D to suppress mast cell numbers and activation. This suggests that if vitamin D is deficient, then corticosteroids might lose their effectiveness.
IBDs (including MC) are known to deplete vitamin D (vitamin D is used up to fight the inflammation). Therefore, it might be possible that your mum may have developed a vitamin D deficiency, and this is the reason why the Entocort is no longer effective. Note that this is my own theory based on the research that I mentioned above, so her doctor will not be aware of it, because it hasn't been proven by medical trials. Unless your mum is already taking a significant amount of vitamin D supplement (more than 5,000 IU per day, for example), then increasing her daily vitamin D supplement might allow the Entocort to begin working again. Of course if she is already taking a relatively large dose of vitamin D, then it might be a good idea to have her vitamin D level tested before increasing her supplementation dosage.
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.
Thank you for the replies :)
GF diet isn't something that she's tried yet, I'm hoping your book will lead to that (I'll post it to her once I've finished it). She has had the Enterolab testing and had 158 for gluten, 67 casein and 27 soy (results are already in the database thread on this site).
She hasn't taken any new meds that I'm aware of.
Glad to hear that the Entocort is likely to stay effective as long as she doesn't stop. That is one relief at least.
Interesting about the Vit D, she was deficient last year (shown on multiple blood tests) and her GP and GI both recommended Vit D tablets. I will ask if she has changed/stopped taking them. She also lives in a fairly sunny area and makes a point of going outside unprotected for 15 mins a day.
One thing I also wanted to ask about that I read in your book Tex - I didn't realise that avoiding NSAID pain killers was a good idea - I had thought avoiding them was only necessary for people with drug-induced MC. I just wanted to clarify everyone with MC should be avoiding them? If so I'll make up a list of painkillers which aren't NSAID for my mum and suggest she just stick to those.
GF diet isn't something that she's tried yet, I'm hoping your book will lead to that (I'll post it to her once I've finished it). She has had the Enterolab testing and had 158 for gluten, 67 casein and 27 soy (results are already in the database thread on this site).
She hasn't taken any new meds that I'm aware of.
Glad to hear that the Entocort is likely to stay effective as long as she doesn't stop. That is one relief at least.
Interesting about the Vit D, she was deficient last year (shown on multiple blood tests) and her GP and GI both recommended Vit D tablets. I will ask if she has changed/stopped taking them. She also lives in a fairly sunny area and makes a point of going outside unprotected for 15 mins a day.
One thing I also wanted to ask about that I read in your book Tex - I didn't realise that avoiding NSAID pain killers was a good idea - I had thought avoiding them was only necessary for people with drug-induced MC. I just wanted to clarify everyone with MC should be avoiding them? If so I'll make up a list of painkillers which aren't NSAID for my mum and suggest she just stick to those.
I think you've hit the nail on the head - I just spoke to my mum and asked if she was still taking the Vit D tablets - no, she stopped about a month ago as it was coming into Springtime here & getting sunnier.
She is going to restart them (has been on 1 x 1000 IU tablet for about 2 years continuous)
Thank you, I never would have even thought to connect those dots.
She is going to restart them (has been on 1 x 1000 IU tablet for about 2 years continuous)
Thank you, I never would have even thought to connect those dots.
-
Gabes-Apg
- Emperor Penguin
- Posts: 8332
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
Shona
even though we get good sunshine and UV in Aus, the bodies ability to convert UV exposure to useful Vit D3 in the body is a bit of a complex process. This process is reduced/compromised with age, if there is inflammation, if there are other deficiencies (ie magnesium) etc.
the other lesser known fact about sun exposure and converting the UV/UB into usable Vit D3, the process is also compromised if you wash the skin with soap within 48 hrs.
Encourage your mum to keep up with the Vit D3 supplementation regardless of how much sunshine she may get!
If your mum will consider stopping gluten and dairy, her body will be ALOT less inflammed. The constant inflammation will be using key nutrients/minerals like Vit D3.
if she wont stop the gluten and dairy, I would consider increasing the Vit D3 dose.
hope this helps
even though we get good sunshine and UV in Aus, the bodies ability to convert UV exposure to useful Vit D3 in the body is a bit of a complex process. This process is reduced/compromised with age, if there is inflammation, if there are other deficiencies (ie magnesium) etc.
the other lesser known fact about sun exposure and converting the UV/UB into usable Vit D3, the process is also compromised if you wash the skin with soap within 48 hrs.
Encourage your mum to keep up with the Vit D3 supplementation regardless of how much sunshine she may get!
If your mum will consider stopping gluten and dairy, her body will be ALOT less inflammed. The constant inflammation will be using key nutrients/minerals like Vit D3.
if she wont stop the gluten and dairy, I would consider increasing the Vit D3 dose.
hope this helps
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
Tex,
There haven't been any long term studies that I am aware of. Also Uceris is typically prescribed for UC.
I had been concerned about this, I wonder if it applies to Uceris? I hope notRegarding the efficacy of Entocort: As long as a patient does not discontinue taking Entocort, it seems to remain effective. If it is discontinued and then the patient begins taking it again, it typically loses some effectiveness each time this cycle is repeated.
There haven't been any long term studies that I am aware of. Also Uceris is typically prescribed for UC.
Thanks for reminding us of this, I have read both books, but apparently did not retain all the info (another reason I am glad you are so willing to remind us of things)corticosteroids suppress inflammation by exploiting (enhancing) the ability of vitamin D to suppress inflammation
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
To my knowledge, there are no published research data to describe/verify this phenomenon, but many authorities agree that it is a well-known issue for corticosteroids in general (though most GI specialists seem to either be unaware of it, or they choose to ignore it). At any rate, since it's considered to be a class-wide problem for corticosteroids, that means that the active ingredient in both Entocort and Uceris, namely budesonide, is the source of the problem, rather than some other ingredient.Theresa wrote:I had been concerned about this, I wonder if it applies to Uceris? I hope not
There haven't been any long term studies that I am aware of. Also Uceris is typically prescribed for UC.
However, I would point out that as far as I am aware, all corticosteroids except for uceris are administered in such a way as to allow their active ingredient to act systemically. Uceris is an exception, in that it is not activated until it has progressed well into the colon, and this is why it is targeted at UC, because UC begins at the distal end of the colon and progresses backwards. Entocort activates a little too soon to be ideal for the treatment of UC, because it can be "used up" before it reaches the distal colon. The lack of a systemic response might possibly exempt Uceris from the cyclic loss of efficacy that plagues the other corticosteroids. Obviously that's just a WAEG though, so I could be all wet.
You're very 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.
I'm not convinced that Uceris is not acting systemically. It changes the way I feel within a couple of hours. It gives me energy...whereas usually getting tired very quickly is a problem. It works like an antidepressant on me... what they refer to as 'feeling of well being'. I understand and believe in placebo effect, but just don't think that's all there is to this. BTW I get hot flashes when I take it and that is listed as a side effect. That also makes me wonder if it changes hormone levels. I had a complete hysterectomy 20 years ago. Took estrogen for several years until the big scare about that causing heart attacks & strokes, so I know first hand what those hot flashes feel like.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Theresa,
I'm somewhat skeptical about that "no systemic effect" claim also, for precisely the reason that you mentioned (hormonal effect). If none of the active ingredient is absorbed into the bloodstream, how could it have a systemic hormonal effect? IMO, the quote below (from pages 56–57 of the vitamin D book identifies and describes the problem):
OK, here's where it gets tricky: All cells contain DNA material, so this reaction (nuclear hormone receptor binding) can occur in the cells of the epithelia of the colon. But in order to have a systemic effect, hormones have to enter the bloodstream. So technically, the manufacturers of Uceris may well be correct (that the budesonide in Uceris does not enter the bloodstream), but the effects of the resulting glucocorticoid receptor binding do indeed result in a systemic event that apparently involves the circulation of hormones produced as a result of the glucocorticoid receptor binding. And as a side note, while most of the sex hormones have a relatively short half-life, estrogen has a relatively long half-life, which means that even a small amount in circulation can have a significant effect, because it lasts longer than most hormones in circulation.
At least it appears to me that this is what is happening with Uceris. I hope I haven't just confused the issue.
Tex
I'm somewhat skeptical about that "no systemic effect" claim also, for precisely the reason that you mentioned (hormonal effect). If none of the active ingredient is absorbed into the bloodstream, how could it have a systemic hormonal effect? IMO, the quote below (from pages 56–57 of the vitamin D book identifies and describes the problem):
I've added the red emphasis of course.Vitamin D is actually a hormone.
In fact, the active form of vitamin D, 1,25(OH)2D3, is a steroid hormone, while the inactive form, 25(OH)D3, can be described as a precursor to a hormone. But before hormones can serve any useful purpose in the body, they must be able to relay their molecular information and instructions, and they do this by binding to specialized proteins called receptors. In humans (and in fact, in all vertebrates), there are five major categories of steroid hormone receptors. They are known as androgen receptors, estrogen receptors, glucocorticoid receptors, mineralocorticoid receptors, and progestin receptors.
Each type is specialized to match the needs of the hormones that it binds with. In the case of the glucocorticoid receptors, they contain nuclear receptors, and this is important to our discussion here, because the active form of vitamin D is a nuclear hormone. For anyone not familiar with this designation, no, a "nuclear" hormone is not radioactive. "Nuclear", in this case, simply refers to the fact that cells in this group are of a type that have a membrane-enclosed nucleus that contains most of their genetic material.
The unique characteristic of nuclear receptors that distinguishes them from other types of receptors is their ability to directly bind with DNA and modify gene expression. Nuclear receptors are able to sense and bind to certain hormones such as cortisol, thyroid, and vitamin D. These hormones act as ligands and activate the respective receptors. For biological purposes, a ligand is simply a substance (typically a small molecule) that binds with a biologically-active (meaning that it is produced by a living organism) molecule in order to form a complex that serves a biological purpose.
Since nuclear receptors have the ability to bind directly to DNA, this means that when they are properly activated, the receptors are able to regulate the expression of adjacent genes. In other words, when the presence of a specific type of hormone is detected, and binding occurs, this activates the receptor, and the corresponding gene is either up-regulated or down-regulated, according to the normal function of the hormone.
OK, here's where it gets tricky: All cells contain DNA material, so this reaction (nuclear hormone receptor binding) can occur in the cells of the epithelia of the colon. But in order to have a systemic effect, hormones have to enter the bloodstream. So technically, the manufacturers of Uceris may well be correct (that the budesonide in Uceris does not enter the bloodstream), but the effects of the resulting glucocorticoid receptor binding do indeed result in a systemic event that apparently involves the circulation of hormones produced as a result of the glucocorticoid receptor binding. And as a side note, while most of the sex hormones have a relatively short half-life, estrogen has a relatively long half-life, which means that even a small amount in circulation can have a significant effect, because it lasts longer than most hormones in circulation.
At least it appears to me that this is what is happening with Uceris. I hope I haven't just confused the issue.
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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This seems to me to highlight one of the major problems with a lot of scientific research. It focuses on the details while ignoring the larger picture. There is of course nothing wrong with this kind of research that looks at minutiae and in fact the scientific method is designed to do just this sort of research. The problem comes when sweeping conclusions are drawn from very targeted research, forgetting, in the words of the song, that the hip bone is connected to the thigh bonetex wrote: OK, here's where it gets tricky: All cells contain DNA material, so this reaction (nuclear hormone receptor binding) can occur in the cells of the epithelia of the colon. But in order to have a systemic effect, hormones have to enter the bloodstream. So technically, the manufacturers of Uceris may well be correct (that the budesonide in Uceris does not enter the bloodstream), but the effects of the resulting glucocorticoid receptor binding do indeed result in a systemic event that apparently involves the circulation of hormones produced as a result of the glucocorticoid receptor binding. And as a side note, while most of the sex hormones have a relatively short half-life, estrogen has a relatively long half-life, which means that even a small amount in circulation can have a significant effect, because it lasts longer than most hormones in circulation.
Tex
Jean
Shona,
I agree with Gabes — unless your mum lives close to the equator, she needs much more than 1,000 IU of vitamin D per day. That probably wouldn't be adequate for someone in Aus in perfect health, let alone someone who has MC. We need a lot more vitamin D than the general public (especially if we do not change our diet to reduce the inflammation). I follow a very restricted diet, and I probably get a lot more sun than your mum does (and the sunlight is more intense here in Central Texas), and I take 3,500 IU of vitamin D in the summer, and at least 5,000–6,000 IU during the colder months.
Tex
I agree with Gabes — unless your mum lives close to the equator, she needs much more than 1,000 IU of vitamin D per day. That probably wouldn't be adequate for someone in Aus in perfect health, let alone someone who has MC. We need a lot more vitamin D than the general public (especially if we do not change our diet to reduce the inflammation). I follow a very restricted diet, and I probably get a lot more sun than your mum does (and the sunlight is more intense here in Central Texas), and I take 3,500 IU of vitamin D in the summer, and at least 5,000–6,000 IU during the colder months.
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.