I think you were still editing your post from when I first read it and missed some of your write up. As I cannot edit mine I am adding another post.
I agree if it does not work why would we trust it... If the dog doesn't hunt...
Overall we will have to see if this can work and I hope that for others that there MC does not get to the point that these decisions will have to be faced.
It is sad to see how a disease like this more or less ignored by the medical community is allowed to propagate. What really needs to happen is educating the consumer on the issues of excessive dietary exposure to items like gluten and soy. like Ant said I think we are at a tipping point; I cannot walk through a market and find 'normal' items that has not be bastardized by gluten or soy. Certainly this is the root of most of these issues.
--Joe
Entocort vs. Purinethol, help!
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Incidentally, I can offer a huge deterrent for anyone considering surgery, as a treatment option for MC. Remember the member whose sibling decided to have an ileostomy, because not even enteral feeding would relieve the constant D? Her GI docs told them that an ileostomy would bring remission, when it was obvious, (to me, at least), that it could not, if an elemental diet was ineffective, so we advised them that surgery would not resolve her issues. They went ahead with the surgery, anyway, (since they trusted their doctors, and they were desperate for a solution). 
Not only did the surgery not resolve the D, but now she has the added symptom of chronic abdominal pain, on top of all the original symptoms.
MC can be a very cruel disease, and it can drive people to do desperate things. It's a crying shame that medical science can't come up with at least one treatment, that will absolutely bring relief, in refractive cases.
Tex
Not only did the surgery not resolve the D, but now she has the added symptom of chronic abdominal pain, on top of all the original symptoms.
MC can be a very cruel disease, and it can drive people to do desperate things. It's a crying shame that medical science can't come up with at least one treatment, that will absolutely bring relief, in refractive cases. 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.
-
Joefnh
- Rockhopper Penguin
- Posts: 2478
- Joined: Wed Apr 21, 2010 8:25 pm
- Location: Southern New Hampshire
Yeah Tex I do remember, that was a such a sad case. I still think of those posts.
I think you have best summed up all that has been said in the last handful of posts
Tex Said
Well put
--Joe
I think you have best summed up all that has been said in the last handful of posts
Tex Said
MC can be a very cruel disease, and it can drive people to do desperate things. It's a crying shame that medical science can't come up with at least one treatment, that will absolutely bring relief, in refractive cases.
Well put
--Joe
Joe
Aha, now I see why we're not on the same page. I'm sorry - obviously I was in too big a hurry, and I forgot the "Entocort" part, when I mentioned using the diet to treat your MC, (as per the quote in your post three responses back).
Yeah, I'm slow to edit my posts, and since you brought that up, I'd like your opinion on that edit option. For over 5 years, I've/we've allowed everyone to edit their own posts, whenever they wished to do so. It's very convenient, of course. Up until the past year, that has never created any major problems. I changed that option, of course, recently, when a member changed a prior post, and then tried to argue that I had completely misread her previous post.
That's not the only reason why I removed the option, though. The main reason why I decided to cancel it, is because it makes the board vulnerable to any member who might have a vendeta, and it makes the database more vulnerable to any hacker who might crack any member's password, because if that were to happen, all of that members archived posts could be easily edited or deleted.
Almost a year ago, one of our members decided that we weren't bending over backwards far enough to help him, even though virtually everyone here had spent many, many hours trying to help him, and we had basically done everything we could, for a couple of years, to try to convince him to try some diet changes, and he continually refused to help himself. Anyway, he decided to leave one weekend, without warning, and before doing so, he apparently sort of went off the deep end, and deleted all his posts, (which numbered in the hundreds). That's why, in some threads, you will see the word "missing", in place of the posts that used to be there.
So my dilemma is, do we leave ourselves vulnerable to the possibility that might happen again, or do we leave those options off? Of course, we can allow editing separately from deleting, if that is desired, but even so, someone could easily wreak havoc with all their posts, by going on a "wild" editing spree, (just as that member went on a "wild" deleting spree).
What do you think, Joe, and anyone else who might have an opinion on this? Is the convenience of editing worth more than the integrity of the database?
Obviously, it's not the end of the world, if we lose a few posts, it's just a bit irritating. So which is the larger irritation - no editing privileges, or losing archived posts?
Tex
I'm sorry - obviously I was in too big a hurry, and I forgot the "Entocort" part, when I mentioned using the diet to treat your MC, (as per the quote in your post three responses back).Yeah, I'm slow to edit my posts, and since you brought that up, I'd like your opinion on that edit option. For over 5 years, I've/we've allowed everyone to edit their own posts, whenever they wished to do so. It's very convenient, of course. Up until the past year, that has never created any major problems. I changed that option, of course, recently, when a member changed a prior post, and then tried to argue that I had completely misread her previous post.
That's not the only reason why I removed the option, though. The main reason why I decided to cancel it, is because it makes the board vulnerable to any member who might have a vendeta, and it makes the database more vulnerable to any hacker who might crack any member's password, because if that were to happen, all of that members archived posts could be easily edited or deleted.
Almost a year ago, one of our members decided that we weren't bending over backwards far enough to help him, even though virtually everyone here had spent many, many hours trying to help him, and we had basically done everything we could, for a couple of years, to try to convince him to try some diet changes, and he continually refused to help himself. Anyway, he decided to leave one weekend, without warning, and before doing so, he apparently sort of went off the deep end, and deleted all his posts, (which numbered in the hundreds). That's why, in some threads, you will see the word "missing", in place of the posts that used to be there.
So my dilemma is, do we leave ourselves vulnerable to the possibility that might happen again, or do we leave those options off? Of course, we can allow editing separately from deleting, if that is desired, but even so, someone could easily wreak havoc with all their posts, by going on a "wild" editing spree, (just as that member went on a "wild" deleting spree).
What do you think, Joe, and anyone else who might have an opinion on this? Is the convenience of editing worth more than the integrity of the database?
Obviously, it's not the end of the world, if we lose a few posts, it's just a bit irritating. So which is the larger irritation - no editing privileges, or losing archived posts?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.
Joe,
I really don't have a strong opinion on this, either way. Most boards, of course, do not allow the editing, (or deleting), of established posts, but that doesn't mean that we have to be a bunch of sheep.
Maybe someone will have some good reasons for leaning one way or the other - if not, I suppose a poll might be in order.
Thanks,
Tex
I really don't have a strong opinion on this, either way. Most boards, of course, do not allow the editing, (or deleting), of established posts, but that doesn't mean that we have to be a bunch of sheep.
Maybe someone will have some good reasons for leaning one way or the other - if not, I suppose a poll might be in order.Thanks,
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 Joe and Tex,
Thanks for the debate.
This is not an issue that is going to get resolved in my mind anytime soon. But I fully intend to be as informed as possible on all the angles.
One thing I plan soon is another bone density test to see if there has been any change. I also need to decide if I should take direct osteoporosis meds which so far I have resisted (they also seem pretty scary
).
Dear Celie,
Thanks and I wish you all success
Tex,
On the edit: could it somehow be on for any post until someone has replied to that post. Even after using the preview option, I still find myself making spelling and grammar corrections within the first few minutes of posting before others reply.
Best, ant
Thanks for the debate.
This is not an issue that is going to get resolved in my mind anytime soon. But I fully intend to be as informed as possible on all the angles.
One thing I plan soon is another bone density test to see if there has been any change. I also need to decide if I should take direct osteoporosis meds which so far I have resisted (they also seem pretty scary
).Dear Celie,
Thanks and I wish you all success
Tex,
On the edit: could it somehow be on for any post until someone has replied to that post. Even after using the preview option, I still find myself making spelling and grammar corrections within the first few minutes of posting before others reply.
Best, ant
My original question about the current dilemma I have to struggle with -- entocort vs. purinethol-- has certainly generated a lot of reaction and I am really grateful for all the debating and resulting information! There is one point though that keeps bothering me. While my GI is trying to convince me to treat the MC with purinethol rather than continuing entocort, I keep in mind the fact that entocort is costly and the doctor practices within a large California HMO organization (which I'll keep nameless). I cannot stop thinking that his decision is colored by monetary considerations and the result is that it is hard for me to trust and accept his rationale. As a matter of fact, I am the one who actually dictated the treatment. In our first meeting, he never mentioned the word "entocort". I did! I had learned about the med on this forum. He wanted to put me on purinethol immediately after using prednisone for a couple of weeks. So even though I have a GI, I feel I am sort of self prescribing and going solo at this point... As for the diet, he recommends following something called FODMAP (or something similar)... a fructose-restricted diet. Never mentions gluten... As Tex said, I should probably look elsewhere for a GI although it might be impossible within the particular HMO I am in.
Dear Dmarcus
For your information. My GI recommended Entocort (after tapering off pepto bismol brought me back to full in D). He then wanted to put me on Mesalazine if the Entocort did not work after a few months (I never went that route due to this board and another doctor's advice). I remember him saying that after that he would have tried Imuran. Anyway, for him Entocort was to be tried (but not necessarily for the long term) before Imuran.
Hope this provides some more context. best, ant
For your information. My GI recommended Entocort (after tapering off pepto bismol brought me back to full in D). He then wanted to put me on Mesalazine if the Entocort did not work after a few months (I never went that route due to this board and another doctor's advice). I remember him saying that after that he would have tried Imuran. Anyway, for him Entocort was to be tried (but not necessarily for the long term) before Imuran.
Hope this provides some more context. best, ant
Hi Demarcus,
While you may be right about the HMO, my step mother has LC, too. The gi doc she was seeing told her that she would just have to live with it. I asked about using Entocort and he said it did not work. He kept telling her to take Immodium (and she was losing about a pound a day at the time) . I took her to my doc and she is doing well on Entocort. And, she has great insurance. No issues of cost were involved. Just a very poorly informed doctor.
Keep the HMO issue in mind. But, do your research and figure out what is best for you. Perhaps this is a doc with whom you can develop a good learning (and teaching) relationship. If he was willing to accept your suggestion before, he might do the same again.
Good luck!
Celie
While you may be right about the HMO, my step mother has LC, too. The gi doc she was seeing told her that she would just have to live with it. I asked about using Entocort and he said it did not work. He kept telling her to take Immodium (and she was losing about a pound a day at the time) . I took her to my doc and she is doing well on Entocort. And, she has great insurance. No issues of cost were involved. Just a very poorly informed doctor.
Keep the HMO issue in mind. But, do your research and figure out what is best for you. Perhaps this is a doc with whom you can develop a good learning (and teaching) relationship. If he was willing to accept your suggestion before, he might do the same again.
Good luck!
Celie
Diane,
There's one more consideration that I hesitate to bring up, because I don't want to accuse your doc of trying to "nickel and dime" you, but most patients on Entocort take the script, get some relief from their symptoms, and may never see the GI specialist again, (unless he or she refuses to renew their Entocort script with a phone call, and/or the patient's GP is not willing prescribe the Entocort at the patient's request). The more powerful mmune system suppressants, of course, require regular monitoring, with followup blood tests, to make sure that the liver or some other organ is not being damaged, so the GI doc gets some repeat business out of the deal. I doubt that's a consideration for most doctors, though, because most office visits aren't particularly lucrative, especially if the patient happens to be on Medicare. Maybe it pays better, though, when Medicare is not involved.
Have you asked your GP for a prescription for Entocort? Many members here find that their GP is much more "patient friendly" than their GI specialist, when it comes to prescribing Entocort. Once your GI doc has prescribed it, and it's on your record, then usually, most GPs will prescribe if for a patient.
Tex
There's one more consideration that I hesitate to bring up, because I don't want to accuse your doc of trying to "nickel and dime" you, but most patients on Entocort take the script, get some relief from their symptoms, and may never see the GI specialist again, (unless he or she refuses to renew their Entocort script with a phone call, and/or the patient's GP is not willing prescribe the Entocort at the patient's request). The more powerful mmune system suppressants, of course, require regular monitoring, with followup blood tests, to make sure that the liver or some other organ is not being damaged, so the GI doc gets some repeat business out of the deal. I doubt that's a consideration for most doctors, though, because most office visits aren't particularly lucrative, especially if the patient happens to be on Medicare. Maybe it pays better, though, when Medicare is not involved.
Have you asked your GP for a prescription for Entocort? Many members here find that their GP is much more "patient friendly" than their GI specialist, when it comes to prescribing Entocort. Once your GI doc has prescribed it, and it's on your record, then usually, most GPs will prescribe if for a patient.
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.
Demarcus, Ant and all,
One more piece of information that I found useful in deciding to follow my docs recommendation and try Imuran is the recent CME program in which Dr. Loftus of the Mayo clinic outlines the treatment options for MC. In it he cites a small case study in which they were able to treat refractory patients successfully with Imuran (Azathioprine).
http://www.totalcme.com/enduringDetail. ... d=tcme0046
This seems to be a rational treatment option. But, the Gabes is right, we all have to find our own way. This forum is so valuable because of the opportunity to communicate with others trying to find "our way."
Celie
One more piece of information that I found useful in deciding to follow my docs recommendation and try Imuran is the recent CME program in which Dr. Loftus of the Mayo clinic outlines the treatment options for MC. In it he cites a small case study in which they were able to treat refractory patients successfully with Imuran (Azathioprine).
http://www.totalcme.com/enduringDetail. ... d=tcme0046
This seems to be a rational treatment option. But, the Gabes is right, we all have to find our own way. This forum is so valuable because of the opportunity to communicate with others trying to find "our way."
Celie
With all due respect to Dr. Loftus, on the surface, he comes across as a very capable, and knowledgeable GI doc. Unfortunately, however, he, (and the GI staff at the Mayo, in general), are professional snobs, and one of his faults is to make fun of Dr. Fine's work, (and indeed, the rest of his cohorts pretty much do the same, since that seems to be an established policy at the Mayo), and their professional snubbing of cutting edge researchers such as Dr. Fine, is almost surely one of the reasons why the medical community continues to stonewall Dr. Fine, and prevent his research reports, and his discoveries, from being accepted for publication in medical journals. In general, when it comes to treating MC, the Mayo GI "clan", is about as "go by the book", "never think out of the box", and "ignore new developments", oriented, as they could possibly be, IMO. Please don't misunderstand me, the GI doctors at the Mayo are very qualified, and probably do quite well at treating most GI issues. Unfortunately, their outdated methods suck, when it comes to treating MC. Again, this is just my opinion, based on their track record.
Several of our members have sought treatment for MC at the Mayo, but I don't recall any of them admitting that they had any degree of success in achieving remission from the treatment that they received there. Maybe some of them will see this post, and comment about their experience there.
Tex
Several of our members have sought treatment for MC at the Mayo, but I don't recall any of them admitting that they had any degree of success in achieving remission from the treatment that they received there. Maybe some of them will see this post, and comment about their experience there.
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.
Tex,
It is interesting that I do not hear that Dr. Loftus makes fun of Dr. Fine as much as he laments that Dr. Fine did not follow through and publish an extended study. In fact, he cites to Dr. Fine's work in recommending trying to achieve remission with pepto bismol because if it can be achieved it is more likely to be maintained than with other medicines.
I know well that not all Mayo docs are good, and I know nothing about this one other than that he is interested in MC. I do, however, appreciate that he is calling for more research and trying to find ways to make us feel better.
Celie
It is interesting that I do not hear that Dr. Loftus makes fun of Dr. Fine as much as he laments that Dr. Fine did not follow through and publish an extended study. In fact, he cites to Dr. Fine's work in recommending trying to achieve remission with pepto bismol because if it can be achieved it is more likely to be maintained than with other medicines.
I know well that not all Mayo docs are good, and I know nothing about this one other than that he is interested in MC. I do, however, appreciate that he is calling for more research and trying to find ways to make us feel better.
Celie