Yep, I'll bet our nickname could have been "Bowl Watchers" as well as "Potty People". Probably harder to explain though.
For me (on Asacol) every day is something different to look at in there.
Love, Shirley
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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MaggieRedwings
- King Penguin
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Morning All,
I am also getting nervous about weaning off of Entocort. As of now, I am supposed to go from 6 mg to 0 on November 26th and I am getting anxious about it. I will have been on it for a litle over 4 months but have already told the doc if the symptoms return, I am going on 3 mg per day for a while and then wean off. Will report on this when it happens.
To find something that has worked so well to northing at all is a scary thought right now.
Love, Maggie
I am also getting nervous about weaning off of Entocort. As of now, I am supposed to go from 6 mg to 0 on November 26th and I am getting anxious about it. I will have been on it for a litle over 4 months but have already told the doc if the symptoms return, I am going on 3 mg per day for a while and then wean off. Will report on this when it happens.
To find something that has worked so well to northing at all is a scary thought right now.
Love, Maggie
Maggie Scarpone
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Resident Birder - I live to bird and enjoy life!
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
Maggie,
This is just my logic but going from 6 to zero in one day isn't exactly a wean off plan.....would it not be better to end this 4 month round of Entocort taking only 3 for awhile to see how you react to that before stopping it altogether? I would be concerned if your symptoms do relapse that just a 3mg maintence dose might not be enough to bring you back to where you are now. You have put so much energy into this so far and I think slowly weaning off this med is a pretty important. Can you discuss that with your GI?
Love,
Joanna
This is just my logic but going from 6 to zero in one day isn't exactly a wean off plan.....would it not be better to end this 4 month round of Entocort taking only 3 for awhile to see how you react to that before stopping it altogether? I would be concerned if your symptoms do relapse that just a 3mg maintence dose might not be enough to bring you back to where you are now. You have put so much energy into this so far and I think slowly weaning off this med is a pretty important. Can you discuss that with your GI?
Sure do understand your feelings. I sure hope this works for you Maggie!MaggieRedwings wrote:To find something that has worked so well to northing at all is a scary thought right now.
Love,
Joanna
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MaggieRedwings
- King Penguin
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Hi Joanna,
I totally agree with you and don't feel it is a weaning program at all. Have been on 6 and do think I am going to go to 3mg per day starting next week and see how that works. That will at least give me a little over 3 weeks on the lower dosage. I am just scared to death to stop it entirely and have my whole world go back to what it was. Norman actually finally appeared last Thursday and has continued to today and only going 2 and rarely 3 times a day is heaven. Cannot one can discuss such a subject this way as a blessing - but it is.
We will see how it goes but the gastro already knows it will be maintenance level if I feel it must be.
Love, Maggie
I totally agree with you and don't feel it is a weaning program at all. Have been on 6 and do think I am going to go to 3mg per day starting next week and see how that works. That will at least give me a little over 3 weeks on the lower dosage. I am just scared to death to stop it entirely and have my whole world go back to what it was. Norman actually finally appeared last Thursday and has continued to today and only going 2 and rarely 3 times a day is heaven. Cannot one can discuss such a subject this way as a blessing - but it is.
We will see how it goes but the gastro already knows it will be maintenance level if I feel it must be.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
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Resident Birder - I live to bird and enjoy life!
Maggie,
Hmmmmmmm. If Norman only showed up last Thursday, that will only give you one month of control, before stopping the treatment. I have a hunch that your GI doc doesn't understand how long it takes the gut to heal, with MC. I wish he were planning on at least a couple more months of treatment, to allow enough time for some significant healing.
Love,
Tex
Hmmmmmmm. If Norman only showed up last Thursday, that will only give you one month of control, before stopping the treatment. I have a hunch that your GI doc doesn't understand how long it takes the gut to heal, with MC. I wish he were planning on at least a couple more months of treatment, to allow enough time for some significant healing.
Love,
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 had an up and down experience for the past week being on 6 mg/day. Yesterday I had three BMs, today, just one. I think that since they are pretty normal, I'm going to stay with the 6 mg. for another three weeks and see if I continue to have just 1 normal BM per day.
Then I plan on going down to 3 mg. per day for 1 month. That will be scary. If I continue to do well, I might do 3 mg. every other day. I'm going to give myself at least 6 months on the Entocort; if necessary, I'll permanently be on it with a small maintenance dose. I was worried about osteoporosis, but I already have it, likely due to an auto-immune reaction. Either way, I'm at risk, so I might as well have a D-free life.
I'm with you, Maggie. I don't want to go back to what I had before. It wasn't just going several times per day. It was the gas, the urgency, the accidents, the noise in the public bathrooms, trying to time the flushing just right, etc. I don't want to do that anymore. And I know that you've been struggling with this for much longer than I have. I'd say you should take your time. You know what's best for your body.
Then I plan on going down to 3 mg. per day for 1 month. That will be scary. If I continue to do well, I might do 3 mg. every other day. I'm going to give myself at least 6 months on the Entocort; if necessary, I'll permanently be on it with a small maintenance dose. I was worried about osteoporosis, but I already have it, likely due to an auto-immune reaction. Either way, I'm at risk, so I might as well have a D-free life.
I'm with you, Maggie. I don't want to go back to what I had before. It wasn't just going several times per day. It was the gas, the urgency, the accidents, the noise in the public bathrooms, trying to time the flushing just right, etc. I don't want to do that anymore. And I know that you've been struggling with this for much longer than I have. I'd say you should take your time. You know what's best for your body.
You never know what you can do until you have to do it.
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harvest_table
- Rockhopper Penguin
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- Joined: Wed May 25, 2005 6:29 pm
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Maggie,MaggieRedwings wrote:Hi Joanna,
I totally agree with you and don't feel it is a weaning program at all. Have been on 6 and do think I am going to go to 3mg per day starting next week and see how that works. That will at least give me a little over 3 weeks on the lower dosage. I am just scared to death to stop it entirely and have my whole world go back to what it was. Norman actually finally appeared last Thursday and has continued to today and only going 2 and rarely 3 times a day is heaven. Cannot one can discuss such a subject this way as a blessing - but it is.
We will see how it goes but the gastro already knows it will be maintenance level if I feel it must be.
Love, Maggie
Who is controling your schedule and doses with this medication? Is your GI looking for input from you? Also, if Nov 26th the magic date he wants you off this (for some reason) it could be extended if you are more comfortable with that. Ask him.
Love,
Joanna
THE GLUTEN FILES
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harvest_table
- Rockhopper Penguin
- Posts: 1509
- Joined: Wed May 25, 2005 6:29 pm
- Location: Fergus Falls, Minnesota
That might be a good call Gloria. Hope you don't have to take a small maintenance dose but you might be giving yourself the best chance not to have to by taking it at least 6 months to let your gut heal. It takes time.Gloria wrote: I'm going to give myself at least 6 months on the Entocort; if necessary, I'll permanently be on it with a small maintenance dose. .
Hang in and thanks for posting.
Love,
Joanna
THE GLUTEN FILES
http://jccglutenfree.googlepages.com/
http://jccglutenfree.googlepages.com/
Yesterday was my DH birthday, so we went to an Italian restaurant with a GF menu. They even had GF pasta that they cook in a separate pot. I mentioned all 5 of my known intolerances and the waiter talked to the cook. He recommended a spinach salad and a chicken with a honey-mustard sauce. Sure looked like it could have had soy in it to me, but I trusted him and ate it.
Had a normal BM this morning, then in the afternoon, I paid the price for the chicken.
I'm not ready for experiments yet, I guess. My DH ate my leftovers tonight. At least he got an Italian restaurant dinner for his birthday...
Had a normal BM this morning, then in the afternoon, I paid the price for the chicken.
I'm not ready for experiments yet, I guess. My DH ate my leftovers tonight. At least he got an Italian restaurant dinner for his birthday...You never know what you can do until you have to do it.
I thought I'd post my progress with weaning off the Entocort.
I stayed on the 6 mg. dosage for a month, then reduced it to 3 mg. the day after Thanksgiving. Didn't want to take a chance.
I didn't have any problems after eating out for Thanksgiving, primarily because I was very careful, and the hostess served a fresh turkey.
Although I had a headache and extreme fatigue when I reduced from 9 to 6 mg., I haven't noticed any difference reducing from 6 to 3 mg. I'm realizing that remission is very fragile. My reactions usually occur after I've eaten out, and I've done that a few times in the past week. I've not had any flares that have lasted more than a day, and even then it's only one or two incidences, so I think I'm pretty lucky. I'm hoping that I'll be able to maintain control once I'm completely off the Entocort. If not, I'm comfortable with taking a pill every now and then as needed.
This diet becomes difficult during the holidays because everybody celebrates it with food. This week there's a faculty breakfast, next week, a faculty luncheon, and last week I attended two conferences where we were fed. I brought my own lunchbox, but I gave in to temptation and ate the fixings inside the flour wrap. No Norman the next day...
I stayed on the 6 mg. dosage for a month, then reduced it to 3 mg. the day after Thanksgiving. Didn't want to take a chance.
I didn't have any problems after eating out for Thanksgiving, primarily because I was very careful, and the hostess served a fresh turkey. Although I had a headache and extreme fatigue when I reduced from 9 to 6 mg., I haven't noticed any difference reducing from 6 to 3 mg. I'm realizing that remission is very fragile. My reactions usually occur after I've eaten out, and I've done that a few times in the past week. I've not had any flares that have lasted more than a day, and even then it's only one or two incidences, so I think I'm pretty lucky. I'm hoping that I'll be able to maintain control once I'm completely off the Entocort. If not, I'm comfortable with taking a pill every now and then as needed.
This diet becomes difficult during the holidays because everybody celebrates it with food. This week there's a faculty breakfast, next week, a faculty luncheon, and last week I attended two conferences where we were fed. I brought my own lunchbox, but I gave in to temptation and ate the fixings inside the flour wrap. No Norman the next day...
You never know what you can do until you have to do it.
Hi Gloria,
Of course, anything inside a flour wrap is going to be contaminated with gluten. It bothers me some that you are reacting, even while taking Entocort. That suggests that either your gut has not had sufficient time to heal, or the dosage rate is too low. Obviously, you are more sensitive than many of us here, since many can tolerate gluten, (especially in small amounts), while taking Entocort, even at the maintenance level. What I am hinting at is the reality that you may have to either strictly avoid gluten, or use a higher rate of Entocort, since every time you have a reaction, your healing suffers a setback.
Having said that, it's obvious that you're making good progress. Being increasingly aware of the hazards, and recognizing the cause of reactions are definitely signs of progress.
Thanks for posting a progress report. That's how we learn from each other, and it's much appreciated.
Tex
Of course, anything inside a flour wrap is going to be contaminated with gluten. It bothers me some that you are reacting, even while taking Entocort. That suggests that either your gut has not had sufficient time to heal, or the dosage rate is too low. Obviously, you are more sensitive than many of us here, since many can tolerate gluten, (especially in small amounts), while taking Entocort, even at the maintenance level. What I am hinting at is the reality that you may have to either strictly avoid gluten, or use a higher rate of Entocort, since every time you have a reaction, your healing suffers a setback.
Having said that, it's obvious that you're making good progress. Being increasingly aware of the hazards, and recognizing the cause of reactions are definitely signs of progress.
Thanks for posting a progress report. That's how we learn from each other, and it's much appreciated.
Tex
Yes, I'm a bit worried that I'm reacting while I'm on Entocort. Today I had a soft stool and no explanation for it. I fear that the protection I've had from the Entorcort is wearing off, even while I'm on a maintenance dosage. Yet, yesterday I had one Norman. It was a good day.
When I came home from work today, my DH wanted to go out to eat. I reluctantly went and had a salad with broiled chicken and my own dressing. DH also made some chocolate-covered fondant candies and some GF pumpkin bread with eggs in it. Of course he wanted me to try them. I've strictly avoided eggs since my Entocort test results showed I'm intolerant to them. I've been wanting to test a small dosage of them, so I ate a slice. We'll see what tomorrow brings. No gas or gurgling so far tonight, which is a good thing. That's usually the first sign that I'm reacting to something.
When I came home from work today, my DH wanted to go out to eat. I reluctantly went and had a salad with broiled chicken and my own dressing. DH also made some chocolate-covered fondant candies and some GF pumpkin bread with eggs in it. Of course he wanted me to try them. I've strictly avoided eggs since my Entocort test results showed I'm intolerant to them. I've been wanting to test a small dosage of them, so I ate a slice. We'll see what tomorrow brings. No gas or gurgling so far tonight, which is a good thing. That's usually the first sign that I'm reacting to something.
You never know what you can do until you have to do it.
If the Entocort can preempt a reaction to eggs, that's definitely a good indication that it's working correctly. I believe that gluten is by far the most potent intolerance that we have to deal with, which is why some of us have to combine both the GF diet and a med, in order to control symptoms.
I suspect that diet alone is not sufficient for the toughest cases, mostly because of the tiny amounts of gluten that are almost ubiquitous these days. Foods can be legally labeled as gluten free, even when they may have up to 20 parts per million of gluten, (IOW, every kilogram of the product can legally contain up to 20 milligrams of gluten). Every time someone plops down a sack of flour on a checkout conveyor in a supermarket, (and when the shelves are restocked with sacks of flour, of course), the air is filled with fine particles of flour dust, which slowly settle on all products in the store that are open to the air, (fruit, vegetables, and anything else that is not prepackaged). The same thing happens in our homes, if we have wheat flour on hand, and someone occasionally uses it. It settles everywhere - on countertops, dishes, food, etc.
Tex
I suspect that diet alone is not sufficient for the toughest cases, mostly because of the tiny amounts of gluten that are almost ubiquitous these days. Foods can be legally labeled as gluten free, even when they may have up to 20 parts per million of gluten, (IOW, every kilogram of the product can legally contain up to 20 milligrams of gluten). Every time someone plops down a sack of flour on a checkout conveyor in a supermarket, (and when the shelves are restocked with sacks of flour, of course), the air is filled with fine particles of flour dust, which slowly settle on all products in the store that are open to the air, (fruit, vegetables, and anything else that is not prepackaged). The same thing happens in our homes, if we have wheat flour on hand, and someone occasionally uses it. It settles everywhere - on countertops, dishes, food, etc.
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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MaggieRedwings
- King Penguin
- Posts: 3865
- Joined: Tue May 31, 2005 3:16 am
- Location: SE Pennsylvania
Morning All,
I have not totally weaned off but am doing 3 mg. every 4 days and seems to be doing just fine. The GI is the one who decided to wean totally but has allowed me to "play" with the dosage as to how I am reacting. If I can stay on 1 every 4 days and things progress like they are I will be a totally happy camper.
Love, Maggie
I have not totally weaned off but am doing 3 mg. every 4 days and seems to be doing just fine. The GI is the one who decided to wean totally but has allowed me to "play" with the dosage as to how I am reacting. If I can stay on 1 every 4 days and things progress like they are I will be a totally happy camper.
Love, Maggie
Maggie Scarpone
___________________
Resident Birder - I live to bird and enjoy life!
___________________
Resident Birder - I live to bird and enjoy life!
