Hi, all
Checking in, also with a question. I've been on a combo of Entocort and Asacol for several months. First 9mg Entocort for a month, then tapering off. I've been doing so much better, with enough energy to bike, swim, etc. and start thinking about doing something for others rather than concentrating on how bad I feel.
I did a few little experiments during this time. When I took must the Entocort I did great, even at 6mg. As I tapered off the Entocort (which is what the GI doctor wanted) and just took the Asacol I did not do so well, and started getting looser with more gas, etc.
Had a doctor's appt yesterday. In short, she gave a prescription for more Entocort, but is opposed to giving it for as long as six months. She's worried about bone loss, etc., which is somewhat of an issue for me, although I am very active and haven't had any problems (I've been known to fall now and then).
Her theory of the condition is that it might be related to inadequate bile absorption (no gall bladder problems, still have it), and that Questran might work. Looking through posts here, it doesn't looks like people have had great problems with it. She also favors the 5ASA drugs, though I don't do all that well with them. She mentioned another one, but I can't recall the name. So, I'm back on entocort, but only for a couple of months, tapering off gradually.
Any thoughts about her theory, and about Questran? She did mention that she is seeing a lot more of these sorts of immune system reactions in the colon.
Thanks!
Helen
Questran?
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I believe that Wayne's observations are right on the money. Bile malabsorption seems to be frequently suspected, (especially for patients who no longer have their gallbladder), and quite a few of our members have tried a bile acid sequestrant, but unless my memory is failing me, (which certainly wouldn't be surprising), I can't recall anyone who reported any success with that treatment.
Most doctors place the same degree of concern on budesonide, that they do with Prednisone, with regard to the risk of bone density loss. Since the enteric coating on Entocort EC, prevents activation of the budesonide until it reaches the ileum and the colon, only 10 to 15 % of the budesonide is absorbed into the bloodstream, compared with about 85 % or higher, for the other corticosteroids. As long as it is not absorbed into the bloodstream, it cannot contribute to bone density loss. At a blood absorption level of only 10 to 15 % of the rate of most corticosteroids, Entocort EC is nowhere near the threat to bone density, that most doctors seem to think it is. The risk is not zero, obviously, but it is only a small fraction of the risk of all the other corticosteroids. Hopefully, the diet will eventually take over, and you will be able to do without the Entocort, anyway, but you probably will not be able to achieve remission in less than 6 months, and the odds are far worse, with the 5-ASA meds, in general. Also, there is a small risk of chronic pancreatitis with the 5-ASA meds, that most doctors are unaware of. Chronic pancreatitis is a serious condition, but usually, (though not always), when the 5-ASA med is discontinued, the pancreatitis will resolve.
Tex
Most doctors place the same degree of concern on budesonide, that they do with Prednisone, with regard to the risk of bone density loss. Since the enteric coating on Entocort EC, prevents activation of the budesonide until it reaches the ileum and the colon, only 10 to 15 % of the budesonide is absorbed into the bloodstream, compared with about 85 % or higher, for the other corticosteroids. As long as it is not absorbed into the bloodstream, it cannot contribute to bone density loss. At a blood absorption level of only 10 to 15 % of the rate of most corticosteroids, Entocort EC is nowhere near the threat to bone density, that most doctors seem to think it is. The risk is not zero, obviously, but it is only a small fraction of the risk of all the other corticosteroids. Hopefully, the diet will eventually take over, and you will be able to do without the Entocort, anyway, but you probably will not be able to achieve remission in less than 6 months, and the odds are far worse, with the 5-ASA meds, in general. Also, there is a small risk of chronic pancreatitis with the 5-ASA meds, that most doctors are unaware of. Chronic pancreatitis is a serious condition, but usually, (though not always), when the 5-ASA med is discontinued, the pancreatitis will resolve.
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.