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Prednisone & Cholestyramine
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Prednisone & Cholestyramine
Has anyone been on prednisone and cholestryramine at the same time? I really want to get off the Prednisone to see if my CC can be controlled by the cholestryramine alone but my doc wants to do a slow taper. I already have a history of the D returning once I stop the prednisone so I'd rather not prolong things. The prednisone has caused a list of side effects I could do without and I'm already battling food sensitivity issues that my GI seems to be oblivious to. I feel like I'm on my own and am trying to figure out why my eyes never stop burning and I always feel sick after I eat. Any suggestions would be appreciated.
Deb,
I'm not an expert - but prednisone can be hard to wean off, so your doctor is probably giving you good advice about the taper. Most people here take Entocort (budesonide) instead of pred, because it's enteric-coated, so you get less of the systemic steroid side effects.
For most of us, diet change is necessary to maintain the progress that drugs help to bring about. In other words, a steroid (or Pepto Bismol, or some other useful medications) can put the lid on the inflammation, but if we continue to eat those foods to which we have an inflammatory response, our symptoms will eventually overwhelm the medication's effect (kind of like a pot that will boil over, if we don't turn off the heat source).
How long have you been on the prednisone?
I'm not an expert - but prednisone can be hard to wean off, so your doctor is probably giving you good advice about the taper. Most people here take Entocort (budesonide) instead of pred, because it's enteric-coated, so you get less of the systemic steroid side effects.
For most of us, diet change is necessary to maintain the progress that drugs help to bring about. In other words, a steroid (or Pepto Bismol, or some other useful medications) can put the lid on the inflammation, but if we continue to eat those foods to which we have an inflammatory response, our symptoms will eventually overwhelm the medication's effect (kind of like a pot that will boil over, if we don't turn off the heat source).
How long have you been on the prednisone?
I've been on it since July and had hoped to be off by now. I tapered off a little over a month ago and the D returned and the former dosage of prednisone that worked was no longer effective. The dosage was increased and now I'm starting to taper again. I used it years ago and the same thing happened. I'm a bit impatient because it scares me to death to be on it but I should be grateful for partial relief. I tried entocort and it wasn't helpful.
I'm told I'm not lactose intolerant nor have celiac disease and have been tested several times for both however I know I have food issues but really am struggling with pinpointing what it is. About a year and half ago I did a blood test through Immuno Laboratorties for food sensitivities and tried the elimination diet religiously for 4 months. I eliminated all wheat, dairy, yeast, and processed foods from my diet along with other "healthy" food that I tested positive for. The D never improved. I have new issues that I didn't have before (eye burning, eye pain, scalloped tongue, loss of taste, facial flushing, puffy feeling in face) so the only thing I can think of doing is eliminating wheat and dairy again to see if it helps. My GI mentioned a referral to Mayo. I'm not sure if that's the answer. I'm wondering if I should get retested for the food sensitivities again. I just wish I knew which foods are ok to eat and I'd gladly stick to it. Have you done rechecks or just go by trial and error? It'd be so much easier if we came with user's manuals. :) The hardest part for me is I want a test that confirms I have a problem and all the tests that I've had done show I have no problems except for CC. I know that's a good thing because my health could be much worse but at the same time it could be so much better if I only knew what to do. I was working with chiropractor who also specializes in functional medicine- he's the one that recommended the food testing but I had to pay everything out of pocket and just couldn't afford it anymore. I have excellent health insurance yet there's no coverage. Big sigh.
I'm told I'm not lactose intolerant nor have celiac disease and have been tested several times for both however I know I have food issues but really am struggling with pinpointing what it is. About a year and half ago I did a blood test through Immuno Laboratorties for food sensitivities and tried the elimination diet religiously for 4 months. I eliminated all wheat, dairy, yeast, and processed foods from my diet along with other "healthy" food that I tested positive for. The D never improved. I have new issues that I didn't have before (eye burning, eye pain, scalloped tongue, loss of taste, facial flushing, puffy feeling in face) so the only thing I can think of doing is eliminating wheat and dairy again to see if it helps. My GI mentioned a referral to Mayo. I'm not sure if that's the answer. I'm wondering if I should get retested for the food sensitivities again. I just wish I knew which foods are ok to eat and I'd gladly stick to it. Have you done rechecks or just go by trial and error? It'd be so much easier if we came with user's manuals. :) The hardest part for me is I want a test that confirms I have a problem and all the tests that I've had done show I have no problems except for CC. I know that's a good thing because my health could be much worse but at the same time it could be so much better if I only knew what to do. I was working with chiropractor who also specializes in functional medicine- he's the one that recommended the food testing but I had to pay everything out of pocket and just couldn't afford it anymore. I have excellent health insurance yet there's no coverage. Big sigh.
Deb,
As Sara said, coming off prednisone is hard. I did it once before after a long time on large doses. It took me forever to come off it, and it was HARD!
I recently took prednisone for a few weeks, not as large a dose as before, but still hefty. It didn't do much for the D and the side effects were not fun. Coming off it took me a long time, and was awful. PAIN! It was really bad.
I came off as fast as I could, but it's not easy. I don't know how much you are taking and for how long, but I strongly advise you to go slow.
You can cry here. I can sympathize and empathize. I hope it goes easily for you.
As Sara said, coming off prednisone is hard. I did it once before after a long time on large doses. It took me forever to come off it, and it was HARD!
I recently took prednisone for a few weeks, not as large a dose as before, but still hefty. It didn't do much for the D and the side effects were not fun. Coming off it took me a long time, and was awful. PAIN! It was really bad.
I came off as fast as I could, but it's not easy. I don't know how much you are taking and for how long, but I strongly advise you to go slow.
You can cry here. I can sympathize and empathize. I hope it goes easily for you.
Hi Deb,
The D will always return after you taper off prednisone, because all that the meds can do is to eliminate most of the existing inflammation - they can't stop new inflammation from being generated, if you continue to eat the foods that cause the inflammation.
The Mayo GI specialists are good, but they are not very useful for treating difficult cases of MC, because they still follow the mistaken belief that diet has nothing to do with MC. Several members here have been through the Mayo, without success, because of the Mayo's outdated treatment program.
The only tests that will reliably detect the types of food sensitivities that are connected with MC, are offered by only one lab in the world, Enterolab, in Dallas, TX. Since they're stool tests, and relatively new technology, most GI docs don't trust them, but that just goes to show how poorly informed, (IOW, ignorant), most GI specialists actually are, because the stool tests are several orders of magnitude more sensitive than any of the blood tests that are available. Enterolab's stool tests will typically detect celiac disease several years before the disease has "matured" enough to be detected by the classic celiac blood tests, (before all that intestinal damage that destroys the villi, has accrued).
We've found the Entorolab tests to be very specific, and very reliable - they're the best tests available to us, by far. The problem is, since most doctors don't trust internet labs, and precious few of them recognize the value of the Enterolab tests, many doctors won't order the tests, and without a doctors order, most insurance companies are even less likely to pay for the tests. You can call Enterolab, (or e-mail them), and ask for the insurance codes for the tests that you are interested in, and then you can check with your insurance company yourself, to see if they will pay for the tests.
Good luck with this, and please don't hesitate to ask, if you have any questions.
Tex
The D will always return after you taper off prednisone, because all that the meds can do is to eliminate most of the existing inflammation - they can't stop new inflammation from being generated, if you continue to eat the foods that cause the inflammation.
The Mayo GI specialists are good, but they are not very useful for treating difficult cases of MC, because they still follow the mistaken belief that diet has nothing to do with MC. Several members here have been through the Mayo, without success, because of the Mayo's outdated treatment program.
The only tests that will reliably detect the types of food sensitivities that are connected with MC, are offered by only one lab in the world, Enterolab, in Dallas, TX. Since they're stool tests, and relatively new technology, most GI docs don't trust them, but that just goes to show how poorly informed, (IOW, ignorant), most GI specialists actually are, because the stool tests are several orders of magnitude more sensitive than any of the blood tests that are available. Enterolab's stool tests will typically detect celiac disease several years before the disease has "matured" enough to be detected by the classic celiac blood tests, (before all that intestinal damage that destroys the villi, has accrued).
We've found the Entorolab tests to be very specific, and very reliable - they're the best tests available to us, by far. The problem is, since most doctors don't trust internet labs, and precious few of them recognize the value of the Enterolab tests, many doctors won't order the tests, and without a doctors order, most insurance companies are even less likely to pay for the tests. You can call Enterolab, (or e-mail them), and ask for the insurance codes for the tests that you are interested in, and then you can check with your insurance company yourself, to see if they will pay for the tests.
Good luck with this, and please don't hesitate to ask, if you have any questions.
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.
Hi - I see Tex has already answered this, while I was puttering around the house and typing absent-mindedly ;) There's some overlap in my comments and his, but maybe hearing it from a slightly different angle will give you different follow-up questions, so I'll go ahead and post it anyway:
Unfortunately, the particular tests you've had are notorious for false negatives - so many celiac patients wind up being told they don't have celiac for years. Then suddenly, they do. (Geez, could the problem be the tests not finding it sooner??)
Also, it is possible to be highly intolerant of wheat without having a "true" celiac gene, or with the celiac gene, but without the official symptoms that let old-school practitioners (which is most all of them) call you celiac, and "allow" you to stop eating gluten.
Most of us do our testing via http://enterolab.com/ - but you can just stop ALL gluten, not only wheat, and see if it helps. (This means specifically no barley, rye, spelt, kamut, 'malt' - and many of us react to oats as well.) Above 90% of us here are sensitive to gluten, as it turns out; virtually all of us also cross-react to dairy - not just lactose, but all dairy (it's the protein in dairy, casein, that is very similar to gluten, and that's what causes an immune response). From there, the next likeliest intolerance is soy, and after that, it's kind of an individual thing - many people have very few foods they must avoid, but some have a pretty long list.
I hope you find the answer - I would guess that while you are weaning off the prednisone, you'll be in a very sensitive time. If it were me, I'd go very hard-core with the diet. (Actually that is precisely what I do, every day, but I find that easier than partial measures.) I currently eat meat, fruit, vegetables, and occasional nuts; olive or coconut oil; coffee, wine and chocolate. GO FIGURE that "whole grains" make me ill, but coffee, wine and chocolate are just fine. Your particular formula may not be the same. I did it GF cornbread and chocolate zucchini cake that a friend made at Thanksgiving - it didn't throw me for a big loop, but I didn't feel as good as I usually do.
Also - other foods that can cause distress, while we are in a serious flare, include excess/added oils, too much fiber, and most sweeteners - natural ones, artificial ones... You are already practiced at avoiding processed foods, which will come in handy! But - giant salads may not be healthy for you, at this time. Very well-cooked veg and peeled fruits - some people do best with cooked fruits - might be a better choice, until more healing takes place.
Best of luck - you are in a challenging time, with the pred-weaning, but you are in the right place for getting your health and your life back. Please keep us posted, and let us know how we can help,
Sara
Unfortunately, the particular tests you've had are notorious for false negatives - so many celiac patients wind up being told they don't have celiac for years. Then suddenly, they do. (Geez, could the problem be the tests not finding it sooner??)
Also, it is possible to be highly intolerant of wheat without having a "true" celiac gene, or with the celiac gene, but without the official symptoms that let old-school practitioners (which is most all of them) call you celiac, and "allow" you to stop eating gluten.
Most of us do our testing via http://enterolab.com/ - but you can just stop ALL gluten, not only wheat, and see if it helps. (This means specifically no barley, rye, spelt, kamut, 'malt' - and many of us react to oats as well.) Above 90% of us here are sensitive to gluten, as it turns out; virtually all of us also cross-react to dairy - not just lactose, but all dairy (it's the protein in dairy, casein, that is very similar to gluten, and that's what causes an immune response). From there, the next likeliest intolerance is soy, and after that, it's kind of an individual thing - many people have very few foods they must avoid, but some have a pretty long list.
I hope you find the answer - I would guess that while you are weaning off the prednisone, you'll be in a very sensitive time. If it were me, I'd go very hard-core with the diet. (Actually that is precisely what I do, every day, but I find that easier than partial measures.) I currently eat meat, fruit, vegetables, and occasional nuts; olive or coconut oil; coffee, wine and chocolate. GO FIGURE that "whole grains" make me ill, but coffee, wine and chocolate are just fine. Your particular formula may not be the same. I did it GF cornbread and chocolate zucchini cake that a friend made at Thanksgiving - it didn't throw me for a big loop, but I didn't feel as good as I usually do.
Also - other foods that can cause distress, while we are in a serious flare, include excess/added oils, too much fiber, and most sweeteners - natural ones, artificial ones... You are already practiced at avoiding processed foods, which will come in handy! But - giant salads may not be healthy for you, at this time. Very well-cooked veg and peeled fruits - some people do best with cooked fruits - might be a better choice, until more healing takes place.
Best of luck - you are in a challenging time, with the pred-weaning, but you are in the right place for getting your health and your life back. Please keep us posted, and let us know how we can help,
Sara
I forgot to address the cholestryramine. Cholestryramine is nothing but a bile-acid sequestrant, and it does absolutely nothing to help suppress the inflammation associated with MC. If you recently had your gallbladder removed, it may help to prevent D due to excess bile in the fecal stream, but not many of us with MC actually benefit from it. Some GI docs prescribe it to control the symptoms of MC, simply because it has the side effect of C, but it's also notorious for causing cramps and abdominal pain, so I would rate it as a rather poor choice for treating MC.
Tex
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.
Since I'm new to this site I was loooking at the page that lists the common abbreviations used here and I must say you have made my night! I laughed until I had tears in my eyes. I've had no choice except to get some sense of humor to poop problems (on good days) because it's so frustrating- it's comforting to know there's other people out there that really get it.
Looking at the Enterolab site - which test is it that I want to order? I think it's the Panel A + C Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel. Is that right? Like I said earlier, in April of 2010 I had an IgG Comprehensive Food Sensitivity Assay done and have the list of food antigens that reacted with my blood serum. Does the stool panel test in a similiar fashion but have more accurate results? Are there additional tests that I should order or just start with this one?
It also said that there was no need to reintroduce gluten for those that are GF. I'm only on my third day eliminating gluten and dairy but is that right? All the other tests say that you have to have gluten in your system in order to have an accurate test?
I also had a Comprehensive Stool Analysis done through Genova Diagnostics and it showed that I have no lactobacillus species or escherichia coli supported in my system and very few bifidobacterium. I did take probiotics for a period of time and noticed no improvement while taking them. They were very expensive and I wondered if one has D does it all just get pushed through? Do you find that probiotics are helpful? If yes, which kind? I've read so many conflicting reports about the bugs already being dead in the bottle by the time they hit the shelf and some have different types and amounts- it's too confusing to know which is worth the money if at all.
I actually requested the cholestryramine from my GI since it was one of the last drugs on the flow chart for treating CC that I hadn't tried. No luck with Pepto, Immodium, Asacol, Entorcort.... I thought it would be worth trying since I sometimes have streatorrhea. I may be grasping at straws but my GI said I could be one of the few that have to stay on prednisone for life. I have a hard time accepting that idea. My son was also diagnosed this summer with primary sclerosing cholangitis and is taking the same meds to help manage the puritis. I know we have two very different issues and the cholestyramine is used for different reasons but I'm really reaching for anything that could help. The past four years have been hell and I've lost out on a lot of life that I can never get back. I had a very difficult time accepting the food issues that I have and I've been very hard on my family. I've finally let go of the anger and am ready to do whatever it takes and modify my diet in order to feel healthy again. I'm just hesistant and cautious because I'm afraid to get my hopes up- I've tried some wierd stuff which my husband jokingly calls voodoo medicine, the Blood Type Diet, elimination diets, and I just finished reading the Body Ecology book which confused me to the point of wanting to give up. According to that book, everything I'm doing now is making me sick. I'm am afraid to eat. I aviod wheat & dairy and have never eaten much meat anyway so I've been comfortable with soy milk, and lots of nuts and beans. This last book said soy is bad and the nuts and beans are too acidic. So when you get the results back do you get the list of foods that should be avoided and foods that are ok then just eliminate the offending foods from your diet and see what happens?
Looking forward to your help- it's much appreciated!!
My poor husband has his preventative colonoscopy tomorrow. My family should get some sort of family discount. This year my 16 year old son had his first colonoscopy, I just had my second one last month, and now my hubby. What a year it's been- I'm hoping for a better 2012.
Looking at the Enterolab site - which test is it that I want to order? I think it's the Panel A + C Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel. Is that right? Like I said earlier, in April of 2010 I had an IgG Comprehensive Food Sensitivity Assay done and have the list of food antigens that reacted with my blood serum. Does the stool panel test in a similiar fashion but have more accurate results? Are there additional tests that I should order or just start with this one?
It also said that there was no need to reintroduce gluten for those that are GF. I'm only on my third day eliminating gluten and dairy but is that right? All the other tests say that you have to have gluten in your system in order to have an accurate test?
I also had a Comprehensive Stool Analysis done through Genova Diagnostics and it showed that I have no lactobacillus species or escherichia coli supported in my system and very few bifidobacterium. I did take probiotics for a period of time and noticed no improvement while taking them. They were very expensive and I wondered if one has D does it all just get pushed through? Do you find that probiotics are helpful? If yes, which kind? I've read so many conflicting reports about the bugs already being dead in the bottle by the time they hit the shelf and some have different types and amounts- it's too confusing to know which is worth the money if at all.
I actually requested the cholestryramine from my GI since it was one of the last drugs on the flow chart for treating CC that I hadn't tried. No luck with Pepto, Immodium, Asacol, Entorcort.... I thought it would be worth trying since I sometimes have streatorrhea. I may be grasping at straws but my GI said I could be one of the few that have to stay on prednisone for life. I have a hard time accepting that idea. My son was also diagnosed this summer with primary sclerosing cholangitis and is taking the same meds to help manage the puritis. I know we have two very different issues and the cholestyramine is used for different reasons but I'm really reaching for anything that could help. The past four years have been hell and I've lost out on a lot of life that I can never get back. I had a very difficult time accepting the food issues that I have and I've been very hard on my family. I've finally let go of the anger and am ready to do whatever it takes and modify my diet in order to feel healthy again. I'm just hesistant and cautious because I'm afraid to get my hopes up- I've tried some wierd stuff which my husband jokingly calls voodoo medicine, the Blood Type Diet, elimination diets, and I just finished reading the Body Ecology book which confused me to the point of wanting to give up. According to that book, everything I'm doing now is making me sick. I'm am afraid to eat. I aviod wheat & dairy and have never eaten much meat anyway so I've been comfortable with soy milk, and lots of nuts and beans. This last book said soy is bad and the nuts and beans are too acidic. So when you get the results back do you get the list of foods that should be avoided and foods that are ok then just eliminate the offending foods from your diet and see what happens?
Looking forward to your help- it's much appreciated!!
My poor husband has his preventative colonoscopy tomorrow. My family should get some sort of family discount. This year my 16 year old son had his first colonoscopy, I just had my second one last month, and now my hubby. What a year it's been- I'm hoping for a better 2012.
While there's nothing wrong with that choice, if you have the money to spare, my preference would be either Panel B, or Panel A. Those are very specific tests, whereas Panel C results are less specific. You can take the results from Panel B or Panel A to the bank, but Panel C results usually have to be verified by dietary testing.DebE13 wrote:Looking at the Enterolab site - which test is it that I want to order? I think it's the Panel A + C Comprehensive Gluten/Antigenic Food Sensitivity Stool Panel. Is that right?
DebE13 wrote:It also said that there was no need to reintroduce gluten for those that are GF. I'm only on my third day eliminating gluten and dairy but is that right? All the other tests say that you have to have gluten in your system in order to have an accurate test?
The Entoerolab tests can reliably detect gluten for at least a year after it is eliminated from the diet. Antibodies to the other foods, though, are not nearly so persistent, so they typically can't be reliably detected after the passage of more than a couple of months after those foods are eliminated from the diet. The higher the antibody levels to begin with, the longer they can be detected. From a practical standpoint, it's usually best to take the sample before more than 4 to 6 weeks have passed after those foods were eliminated from the diet, to avoid the possibility of a false negative result. Gluten, is the exception, of course, because gluten antibodies have a much longer half-life.
Probiotics are one of those things that sound as though they should be very helpful, but the reality is that our needs are very individualized, and most of use are unable to find a probiotic that seems to provide any benefits for us. In fact, some of us are lucky to even find one that does not make us much, much worse. The problem is that laboratory-bred probiotic bacteria will not "attach" to the gut, so they can never establish a thriving colony. Only bacteria that were originally part of an established colony in a human gut, can properly "attach".
I have a hard time accepting that idea, also, because that would tend to result in a much shorter, miserable life, as the Draconian side effects of prednisone began to take their toll. I would definitely try every possible type of dietary control before I even considered a lifetime of prednisone treatment.DebE13 wrote:I may be grasping at straws but my GI said I could be one of the few that have to stay on prednisone for life. I have a hard time accepting that idea.
If I were in your shoes, I would give some serious thought to ordering a gene test, and an anti-gliadin antibody test from Enterolab for your son, as well. Primary sclerosing cholangitis can be associated with gluten-sensitivity. Over half of all patients with acute liver failure have anti-transglutaminase antibodies, which suggests a role of gluten sensitivity in primary biliary cirrhosis.
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've tried some weird things in my time, too... I bet a lot of us have! It seems obvious now, in retrospect, that I was trying those things because *I wanted to feel better*! My husband was never looking for a special diet or program, because his health was just humming along... (and still, he reports feeling significant improvement since the 'in-house' diet has gone GF).
If cost is not a problem GO FOR IT! Please know that the results for gluten, dairy, soy (and perhaps eggs/yeast?) seem to be more "written in stone" than those for meats/nuts/grains - and they are newer (I was among the first of us who requested that panel, after it was introduced), and the results for those seem to be more ambivalent, and better for guiding our own elimination testing - the accompanying interpretation that comes with the test results explains this, and we'll help you figure out anything that's still unclear.
I would also add the genetic test. If your son's PSC is gluten related, maybe this could be a shortcut to some relief for the whole family. (If you haven't already Googled PSC & gluten... or PSC & celiac...)
I'm with you - you don't have to be on prednisone for life, though you may have to continue for longer than you'd like, to get off it comfortably.
Wishing your whole family a very healthy 2012!
If cost is not a problem GO FOR IT! Please know that the results for gluten, dairy, soy (and perhaps eggs/yeast?) seem to be more "written in stone" than those for meats/nuts/grains - and they are newer (I was among the first of us who requested that panel, after it was introduced), and the results for those seem to be more ambivalent, and better for guiding our own elimination testing - the accompanying interpretation that comes with the test results explains this, and we'll help you figure out anything that's still unclear.
I would also add the genetic test. If your son's PSC is gluten related, maybe this could be a shortcut to some relief for the whole family. (If you haven't already Googled PSC & gluten... or PSC & celiac...)
I'm with you - you don't have to be on prednisone for life, though you may have to continue for longer than you'd like, to get off it comfortably.
Wishing your whole family a very healthy 2012!