Visit the Microscopic Colitis Foundation Website
Hello everyone!
I'm doing pretty well these days but I need more information. My GI doc is still insisting I end my Entocort use and has given me three months. I've managed to reduce my use to two 3mg caps a day for the las 6 months. However, each time I attempt to reduce to 1 cap within 3 days I have nausea, cramping and every sign that the big D is on the horizon. He doesn't seem to recognize how the big D impacts a persons life...I became so irritated with him on the phone I actually said 'You've never had to deal with it'...his suggestion was to get adult diapers! Nice.
I know from reading here that many have reduced your Entocort use very slowly...so should I open the caps and reduce a little at a time? Can I do that without having problems? I have Imodium to help with the D but it doesn't help with the nausea or cramping...I use Ginger/hot water for tea and that helps a little with the nausea...not eating stops the cramps but of course I can't do that...even broth brings on cramps. Miserable.
I must need to make more changes in my diet.
I'm gluten and casine free but will return to my chicken stock and carrot soup if need be...I can't afford the new MRT tests I'm reading about and don't know what LEAP is yet (I'm still catching up).
I'd love to go on a juicing fast but from what I'm reading it's not recommended...I'm thinking about going Paleo and seeing how well I do on that.
I'm happy to see how well folks are doing and still amazed at the body of knowledge here...
Gratefully.
Gay
I'm Back To Ask The Experts... :0)
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gay,
It's too bad that your doctor is insisting that you get off Entocort. I've been taking it on and off for almost 5 years. My GI just wrote another prescription for 9 mg./day.
If you can't go below 6 mg./day, you most likely do need to remove more foods from your diet. Entocort gives the illusion of having resolved our MC issues, but it really masks the symptoms. The ideal way to wean off of it is to reach the dosage where you begin to have symptoms, but don't have a flare. Then you eliminate the most likely foods to see if you can resolve the symptoms. If you are GF and CF, the next likely food to eliminate is soy.
If necessary, you can by pass your GI and order generic Entocort from overseas.
Gloria
It's too bad that your doctor is insisting that you get off Entocort. I've been taking it on and off for almost 5 years. My GI just wrote another prescription for 9 mg./day.
If you can't go below 6 mg./day, you most likely do need to remove more foods from your diet. Entocort gives the illusion of having resolved our MC issues, but it really masks the symptoms. The ideal way to wean off of it is to reach the dosage where you begin to have symptoms, but don't have a flare. Then you eliminate the most likely foods to see if you can resolve the symptoms. If you are GF and CF, the next likely food to eliminate is soy.
If necessary, you can by pass your GI and order generic Entocort from overseas.
Gloria
You never know what you can do until you have to do it.
Thank You Gloria...I remember reading about your efforts to reduce your usage and being guided by your experience. I've been reading a lot today and I'm thinking I may have Mast Cell involvement...I just took a sip of apple juice and of course felt a stomach twang...I have episodes of itchy eyes, what sounds like water in my ears (very strange), stuffy head, sneezing...and a blistery rash on my hands that seems to be better with my diet changes but I never know when it will reappear.
This doctor an I have gone rounds for the last 8-9 months...he says he's worried about my bone health, I said last xray I had very healthy bones, couldn't we test to keep track? Yes, he says, we could do that...(I'd swear here but I'm on my best behavior... :0)) They act as though this isn't serious...it's so frustrating...and I read so many similar stories here.
So now I'm reading this thread... http://www.perskyfarms.com/phpBB2/viewt ... mast+cells and thinking about ordering some products to take..Histame (I think)..and avoid more foods. This is getting complicated again...
If I reduce to 1 cap a day I get bloating, rumbling, cramps and begin to feel urgency...that's when I freak out and take more Entocort. You suggest I stick to it and see what happens?
If I need to order from overseas, do I have to have a prescription? If I recall it costs about $50 mo...I'm on disability and money is tight.
I'm glad to hear you're doing well.
This doctor an I have gone rounds for the last 8-9 months...he says he's worried about my bone health, I said last xray I had very healthy bones, couldn't we test to keep track? Yes, he says, we could do that...(I'd swear here but I'm on my best behavior... :0)) They act as though this isn't serious...it's so frustrating...and I read so many similar stories here.
So now I'm reading this thread... http://www.perskyfarms.com/phpBB2/viewt ... mast+cells and thinking about ordering some products to take..Histame (I think)..and avoid more foods. This is getting complicated again...
If I reduce to 1 cap a day I get bloating, rumbling, cramps and begin to feel urgency...that's when I freak out and take more Entocort. You suggest I stick to it and see what happens?
If I need to order from overseas, do I have to have a prescription? If I recall it costs about $50 mo...I'm on disability and money is tight.
I'm glad to hear you're doing well.
Hi Gay,
I put my well-being ahead of my doctor's opinion. If I know that Entocort is helping me and going off of it would put me back to ground zero, then I'm taking the Entocort, whether he wants to prescribe it or not. If my GI didn't write me a prescription at this last visit, I was prepared to purchase it overseas. However, I should add that I have eliminated all but a few foods in my quest for remission. I have reached the point where I will no longer get enough calories or nutrition if I eliminate any more foods. Plus, I suspect that I would eventually become intolerant to most of my remaining foods. I also think I have a problem with mast cells, but I seem to react to the antihistamines I've tried.
I didn't realize that you were on disability. You may be getting Entocort cheaper through your disability coverage than you could through an overseas pharmacy. You need a prescription to order from Canada, but not from the pharmacy below:
Gloria
I put my well-being ahead of my doctor's opinion. If I know that Entocort is helping me and going off of it would put me back to ground zero, then I'm taking the Entocort, whether he wants to prescribe it or not. If my GI didn't write me a prescription at this last visit, I was prepared to purchase it overseas. However, I should add that I have eliminated all but a few foods in my quest for remission. I have reached the point where I will no longer get enough calories or nutrition if I eliminate any more foods. Plus, I suspect that I would eventually become intolerant to most of my remaining foods. I also think I have a problem with mast cells, but I seem to react to the antihistamines I've tried.
I didn't realize that you were on disability. You may be getting Entocort cheaper through your disability coverage than you could through an overseas pharmacy. You need a prescription to order from Canada, but not from the pharmacy below:
Tex wrote:Quite a few members order their Entocort, (actually, a generic form of budesonide, called Budez CR), from an online pharmacy located in Cypress. To give you a price comparison, the cost of a 90 day supply, (270 capsules), is $121.50, plus shipping. It usually takes about 3 weeks to receive an order, but the biggest holdup is in Customs, so deliveries from Canada may not be much faster. From Canada, though, you can buy the branded product, (Entocort EC), if you prefer, (if you don't trust the generic). Of course, the branded product is much more expensive, even in Canada. Most Canadian pharmacies require a prescription, (even though prescriptions written by U. S. doctors are only valid inside the borders of the U. S.), whereas most overseas online pharmacies do not require a prescription for ordering. The members who are using the Budez CR have found that for them, at least, it seems to be just as effective as the high-priced stuff.
http://www.alldaychemist.com/1283_Entocort-EC
Gloria
You never know what you can do until you have to do it.
Hi Gay,
I've been off of Ento for about 7 weeks now after 4.5 month stint on Ento (I tried for 6 mths but could no longer take the dizziness.) Please note I was able to get off Ento without having had either the Enterolab or the MRT testing. About 4 weeks after I got off Ento I sent in a stool sample to Enterlob to help me move forward but just wanted to share that it is possible to get off of the drugs without testing.
In terms of my taper off basically I listened to my body to tell me when to "step down." When I had 3 consecutive days of constipation (little rocks) then I stepped down to the next level.
My recap of stages went as follows but I'm sure this will vary widely by person: 3 pills-3 weeks, 2 pills-2 weeks, 1 pill 1 week, 1 pill every other day-1 month, 1 pill every third day-1 month, 1 pill every 4th day-2 weeks and 1 pill every 5th day two weeks. My plan was to go the extremely long taper of 5-6 months as recommended by this board but I ended up stopping at 4.5 months. I like your idea of 2 pills then one pill then two pills then 1 pill for awhile. See how it goes.
I found it EXTREMELY DIFFICULT to identify problem foods while I was on Entocort. During the 4.5 month stint I could only identify corn as being problematic for me. I totally didn't understand the whole food sensitvity thing. Entocort is going to mask any food sensitivities that you have. It was only 14 days after my last Entocort pill that I could clearly tell that for me rice, apple juice and quinoa are also problematic.
If you decide to try to taper down you may want to post some of the foods you are eating for help from readers.
Good luck with whatever direction you decide to go on....i.e. getting Ento thru non traditional channels or working on taper off. Brandy
I've been off of Ento for about 7 weeks now after 4.5 month stint on Ento (I tried for 6 mths but could no longer take the dizziness.) Please note I was able to get off Ento without having had either the Enterolab or the MRT testing. About 4 weeks after I got off Ento I sent in a stool sample to Enterlob to help me move forward but just wanted to share that it is possible to get off of the drugs without testing.
In terms of my taper off basically I listened to my body to tell me when to "step down." When I had 3 consecutive days of constipation (little rocks) then I stepped down to the next level.
My recap of stages went as follows but I'm sure this will vary widely by person: 3 pills-3 weeks, 2 pills-2 weeks, 1 pill 1 week, 1 pill every other day-1 month, 1 pill every third day-1 month, 1 pill every 4th day-2 weeks and 1 pill every 5th day two weeks. My plan was to go the extremely long taper of 5-6 months as recommended by this board but I ended up stopping at 4.5 months. I like your idea of 2 pills then one pill then two pills then 1 pill for awhile. See how it goes.
I found it EXTREMELY DIFFICULT to identify problem foods while I was on Entocort. During the 4.5 month stint I could only identify corn as being problematic for me. I totally didn't understand the whole food sensitvity thing. Entocort is going to mask any food sensitivities that you have. It was only 14 days after my last Entocort pill that I could clearly tell that for me rice, apple juice and quinoa are also problematic.
If you decide to try to taper down you may want to post some of the foods you are eating for help from readers.
Good luck with whatever direction you decide to go on....i.e. getting Ento thru non traditional channels or working on taper off. Brandy
Gloria,
Yes my Entocort is affordable due to my disability medical coverage...otherwise I'd be in big trouble. I know that you have been particularly challenged with finding foods you can eat. How are you managing to stay healthy? I agree, I have to come before the doctor. I'm very honest with him but he is a member of the 'flock' who seem to think there isn't any correlation between food and MC...in other words he thinks I'm a Kook. I don't care what he thinks in that regard...I know from looking around that the only real information that applies to keeping healthy with this illness is right here with all of you. I'm going to do my best to get off Entocort if I can...and to continue to take it if I must. It's possible I'm having side effects but nothing very noticeable. I felt so rotten when I started that there was no way I could tell what caused what...I'm feeling much better now.
I'm going to become more educated on the MAST cells and what I need to try in that regard...how frustrating for you that you're so reactive...((hugs))
Thank You for the information about ordering overseas and alldaychemists...much appreciated.
Brandy,
You sound as though you're doing very well :0) Thanks for sharing your experience with tapering off and the results. I hope rice and quinoa aren't two more I can't have...I'm looking at the lists of foods I'm going to have to avoid that trigger MAST cells and wondering how I'm going to eat?? I'll post what I'm eating....it looks like I'm going to have to keep it very simple again.
I have 2 months to do this taper...with luck I'll accomplish it.
Thanks for sharing your knowledge and experience with me...:0)
Yes my Entocort is affordable due to my disability medical coverage...otherwise I'd be in big trouble. I know that you have been particularly challenged with finding foods you can eat. How are you managing to stay healthy? I agree, I have to come before the doctor. I'm very honest with him but he is a member of the 'flock' who seem to think there isn't any correlation between food and MC...in other words he thinks I'm a Kook. I don't care what he thinks in that regard...I know from looking around that the only real information that applies to keeping healthy with this illness is right here with all of you. I'm going to do my best to get off Entocort if I can...and to continue to take it if I must. It's possible I'm having side effects but nothing very noticeable. I felt so rotten when I started that there was no way I could tell what caused what...I'm feeling much better now.
I'm going to become more educated on the MAST cells and what I need to try in that regard...how frustrating for you that you're so reactive...((hugs))
Thank You for the information about ordering overseas and alldaychemists...much appreciated.
Brandy,
You sound as though you're doing very well :0) Thanks for sharing your experience with tapering off and the results. I hope rice and quinoa aren't two more I can't have...I'm looking at the lists of foods I'm going to have to avoid that trigger MAST cells and wondering how I'm going to eat?? I'll post what I'm eating....it looks like I'm going to have to keep it very simple again.
I have 2 months to do this taper...with luck I'll accomplish it.
Thanks for sharing your knowledge and experience with me...:0)
Hi Gay,
I agree with Gloria and Brandy. Keep in mind that you're relapsing when you reduce the Entocort dose, not because you're not tapering off correctly, but because you're reducing the dose, and you apparently still have some foods in your diet that are triggering a reaction. IOW, no matter how you go about reducing the dose, your symptoms are still going to relapse, if something in your diet is producing antibodies, or causing irritation. I agree with Gloria that the next likely food-sensitivity is soy. After that comes eggs, in most cases, but it could certainly be something else, instead.
If you suspect mast cell problems, then avoiding any dried, aged, or fermented foods, or foods that contain alcohol, should help. That means foods such as:
alcoholic beverages
avacados
aged or fermented cheese
cider
dried fruit
eggplant
fish such as anchovies, mackerel, sardines, herring, etc.
mushrooms
processed, pickled or smoked meats
sauerkraut
soured or fermented dairy products
soured breads, with a high yeast content
spinach
tomatoes
vinegar, and foods that contain vinegar
If that helps, then it implies that you may also need to avoid foods that promote the degranulation of mast cells, such as:
alcohol
bananas
chocolate
eggs
fish
milk
papayas
pineapple
shellfish
strawberries
tomatoes
If taking an antihistamine before meals, helps - that's pretty strong evidence that you have a mast cell issue. Approximately 70% of everyone who has either Crohn's disease, ulcerative colitis, celiac disease, CC, LC, or MC, will test positive for mastocytic enterocolitis, upon analysis of biopsy samples from their colon, stained with a tryptase-based stain, to make the mast cells more visible.
That's not a typo - 70% of us have ME, and many of the rest of us who don't qualify for a diagnosis of ME, probably have mast cell activation syndrome, (MCAS), or mast cell activation disorder, (MCAD), as it's sometimes called. Despite a severe lack of knowledge in the gastroenterology community, mast cells are a huge item in MC, (and in all the other inflammation-based digestive diseases that typically present with diarrhea).
Regarding the Entocort/osteoporisis issue, most, (but not all), GI docs are generally scared to death of prescribing long-term use of any corticosteroid. Since bones are not part of their turf, they don't normally even consider the bone density history of any patient - they treat them all as if they're all taking prednisone, and as if they're all very vulnerable to osteoporosis. In reality, everyone is different, (and budesonide is a low-risk corticosteroid), so different rules should apply, (but bone health is not their job, so they don't want to get involved in monitoring it). I agree with Gloria on this issue - we have to be our own health advocate, because most GI specialists are going to take the easy route, and they just don't care to get involved with anything that takes up more of their time, requires extra study, and actually forces them to think. After all, it's no hide off their butt, so to speak - they're not the one who is chained to the bathroom.
Tex
I agree with Gloria and Brandy. Keep in mind that you're relapsing when you reduce the Entocort dose, not because you're not tapering off correctly, but because you're reducing the dose, and you apparently still have some foods in your diet that are triggering a reaction. IOW, no matter how you go about reducing the dose, your symptoms are still going to relapse, if something in your diet is producing antibodies, or causing irritation. I agree with Gloria that the next likely food-sensitivity is soy. After that comes eggs, in most cases, but it could certainly be something else, instead.
If you suspect mast cell problems, then avoiding any dried, aged, or fermented foods, or foods that contain alcohol, should help. That means foods such as:
alcoholic beverages
avacados
aged or fermented cheese
cider
dried fruit
eggplant
fish such as anchovies, mackerel, sardines, herring, etc.
mushrooms
processed, pickled or smoked meats
sauerkraut
soured or fermented dairy products
soured breads, with a high yeast content
spinach
tomatoes
vinegar, and foods that contain vinegar
If that helps, then it implies that you may also need to avoid foods that promote the degranulation of mast cells, such as:
alcohol
bananas
chocolate
eggs
fish
milk
papayas
pineapple
shellfish
strawberries
tomatoes
If taking an antihistamine before meals, helps - that's pretty strong evidence that you have a mast cell issue. Approximately 70% of everyone who has either Crohn's disease, ulcerative colitis, celiac disease, CC, LC, or MC, will test positive for mastocytic enterocolitis, upon analysis of biopsy samples from their colon, stained with a tryptase-based stain, to make the mast cells more visible.
That's not a typo - 70% of us have ME, and many of the rest of us who don't qualify for a diagnosis of ME, probably have mast cell activation syndrome, (MCAS), or mast cell activation disorder, (MCAD), as it's sometimes called. Despite a severe lack of knowledge in the gastroenterology community, mast cells are a huge item in MC, (and in all the other inflammation-based digestive diseases that typically present with diarrhea).
Regarding the Entocort/osteoporisis issue, most, (but not all), GI docs are generally scared to death of prescribing long-term use of any corticosteroid. Since bones are not part of their turf, they don't normally even consider the bone density history of any patient - they treat them all as if they're all taking prednisone, and as if they're all very vulnerable to osteoporosis. In reality, everyone is different, (and budesonide is a low-risk corticosteroid), so different rules should apply, (but bone health is not their job, so they don't want to get involved in monitoring it). I agree with Gloria on this issue - we have to be our own health advocate, because most GI specialists are going to take the easy route, and they just don't care to get involved with anything that takes up more of their time, requires extra study, and actually forces them to think. After all, it's no hide off their butt, so to speak - they're not the one who is chained to the bathroom.
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 Tex,
Well, there goes my smoothies...*sigh*.... banana, orange juice, almond milk with various herbs and seaweed....I'll have to get creative :0) Everything on the list is a favorite!! Oh the pain.....but, if it means I can get off the Entocort and feel better, whatever! OK...now I have to find the list for what I can eat...and stock up on some good antihistamines.
I wouldn't be able to do this without the knowledge here, and all you helpful, caring souls.
Thank You!
Well, there goes my smoothies...*sigh*.... banana, orange juice, almond milk with various herbs and seaweed....I'll have to get creative :0) Everything on the list is a favorite!! Oh the pain.....but, if it means I can get off the Entocort and feel better, whatever! OK...now I have to find the list for what I can eat...and stock up on some good antihistamines.
I wouldn't be able to do this without the knowledge here, and all you helpful, caring souls.
Thank You!
Gay,
FWIW, most of us have a problem with citric acid while we are recovering. Orange juice caused prompt nausea for me, sometimes followed by vomiting, and always followed by D.
Tex
FWIW, most of us have a problem with citric acid while we are recovering. Orange juice caused prompt nausea for me, sometimes followed by vomiting, and always followed by D.
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 thought I had entered my results from my Enterolab tests but I can't find anywhere to do that here...so when I locate them again I'll post those. Soy wasn't a problem but wheat and casein were. From what I'm reading that may not still be true...*sigh*
My GI suggested I get enteric coated peppermint oil capsules and take them 3x daily when needed. Has anyone here tried that?
My GI suggested I get enteric coated peppermint oil capsules and take them 3x daily when needed. Has anyone here tried that?
Peppermint is one of the things that leads to acid reflux/GERD, so if you decide to take it, be sure that the capsules are indeed enteric-coated, so that they don't activate in your stomach.
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.
Pepto bismol makes me nauseous, always has...I'm thinking this would do the same. BTW, I've been taking benadryl and it seems to be helping..I'm putting together a grocery list based on your post above (Thank You!) and what I can find online. I want to avoid fish, chicken, eggs and rice...should I switch over to fresh pork and beef and fresh vegetables? Carrots, broccoli, potatoes (occasionally)...did I hear correctly that bacon might be ok if I can find some without the added no, noes? Almond milk...1 to 2 cups of coffee...no tea (ack! I'm a tea drinker)..lots of water and histame http://www.iherb.com/Naturally-Vitamins ... 38748?at=0
Green apples, no banana's, blueberries? No oatmeal...can I have cream of rice or should I just avoid all rice products? I have Pamela's pancake mix...yum, what a treat...I'll check the ingredients. No rice cakes or peanut butter....any nut butter....I'll freeze all my various flours to keep them fresh. I also read not to eat left over meats because they develop hitamine after cooking and storage...fresh cooked meats only.
Regardless of the available information online this is still the best place I've found for up to date information.
I'm grateful to you all.
Green apples, no banana's, blueberries? No oatmeal...can I have cream of rice or should I just avoid all rice products? I have Pamela's pancake mix...yum, what a treat...I'll check the ingredients. No rice cakes or peanut butter....any nut butter....I'll freeze all my various flours to keep them fresh. I also read not to eat left over meats because they develop hitamine after cooking and storage...fresh cooked meats only.
Regardless of the available information online this is still the best place I've found for up to date information.
I'm grateful to you all.
Gay,
Chicken should be OK, unless you know or suspect that you're sensitive to it, (as long as it's fresh). Pork and beef should be much safer than fish, though some of us have problems with beef, (especially aged beef - such as USDA Prime). Apples are a problem for many of us, because of the fiber. If you choose to eat apples, be sure that they are peeled, and overcooked, and limit the amount. I've never had a problem with bacon, though for some people, traditional smoked, cured bacon might be a problem, due to the ageing. A lot of bacon these days is chemical cured, so it's not aged. If bacon causes problems, pork belly, (uncured bacon), is available in some locations, and it may be usable as a safe substitute for bacon.
I don't understand why you want to avoid rice, but maybe I missed something.
I used to love Pamela's Pancake Mix - it's the best available. I had to give it up, though, because it contains cultured buttermilk. I'm using King Arthur pancake mix, now. It's not quite as good, (IMO), and it's more expensive, but it seems to be the second best pancake mix available.
Tex
Chicken should be OK, unless you know or suspect that you're sensitive to it, (as long as it's fresh). Pork and beef should be much safer than fish, though some of us have problems with beef, (especially aged beef - such as USDA Prime). Apples are a problem for many of us, because of the fiber. If you choose to eat apples, be sure that they are peeled, and overcooked, and limit the amount. I've never had a problem with bacon, though for some people, traditional smoked, cured bacon might be a problem, due to the ageing. A lot of bacon these days is chemical cured, so it's not aged. If bacon causes problems, pork belly, (uncured bacon), is available in some locations, and it may be usable as a safe substitute for bacon.
I don't understand why you want to avoid rice, but maybe I missed something.
I used to love Pamela's Pancake Mix - it's the best available. I had to give it up, though, because it contains cultured buttermilk. I'm using King Arthur pancake mix, now. It's not quite as good, (IMO), and it's more expensive, but it seems to be the second best pancake mix available.
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.