Oops forgot my entocort yesterday
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Oops forgot my entocort yesterday
Well........I realized last night that I forgot to take my entocort yesterday morning. I took todays dose this morning but did not see any side affects from skipping a day. I'm currently taking 2 capsules a day now for 3 weeks and 3 more weeks to go with that dose. I guess I'm wondering since I showed no side affects from skipping yesterdays dose.....do you think it would be safe me for to start taking it every other day to wean off? Maybe I'm a bit anxious but I do have an incredible appetite since I started taking this so I have just about 'cooked veggied' myself to death lately trying to at least eat healthier. Have put back on 7lbs in the last 9 weeks and am truly trying NOT to. Usually once a week I might have a sweet treat and potatoes maybe 3 times a week. Still excerise biking and now yoga classes but really don't want to keep gaining the weight. So I'm hoping the sooner I get off the sooner I'll quit sitting around wanting to eat something. I've also decided to go back to work part time and will be starting by next week. I worked 35 yrs in the engineering world of a large manufacturing company in Peoria before I retired when this MC started. We worked with many contract suppliers and I'm going to work for a contract company overseeing their office that does the engineering work for my old company. So won't be anything new and will be a lot less stress for me and part time only. I supervised 27 people on my previous job and this will be supervising 7 people. Much easier and hoping that returning to work part time will also take the boredom out of my life which I think also makes me sit around and wanna eat!!!!! So you entocort experts that have already been through it..........what do you think??? Can I start weaning every other day and will it help to scale down my appetite to get off the steroid???
Cathy
Cathy,
I'm certainly not an Entocort expert (I've never taken it), but it's not surprising that you could skip a day without any ill effects. Corticosteroids tend to maintain a rather significant residual carryover, so it takes a while for them to be completely purged from the body. That said, the fact that you seem to want to wean off the med, and you didn't show any symptoms from skipping a dose, suggests that it might be time to consider tapering the dose.
You're the best judge of your own situation, obviously.
Concerning the unwanted weight gain: Has your thyroid function been checked lately? Gaining weight when there's no reason why you should be gaining weight is one of the common markers of hypothyroidism. Of course, it's also a common marker of taking Entocort EC.
Tex
P. S. We seem to have a fair number of engineers on this board.
I'm certainly not an Entocort expert (I've never taken it), but it's not surprising that you could skip a day without any ill effects. Corticosteroids tend to maintain a rather significant residual carryover, so it takes a while for them to be completely purged from the body. That said, the fact that you seem to want to wean off the med, and you didn't show any symptoms from skipping a dose, suggests that it might be time to consider tapering the dose.
You're the best judge of your own situation, obviously.Concerning the unwanted weight gain: Has your thyroid function been checked lately? Gaining weight when there's no reason why you should be gaining weight is one of the common markers of hypothyroidism. Of course, it's also a common marker of taking Entocort EC.
Tex
P. S. We seem to have a fair number of engineers on this board.
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 Cathy,
I was a 4.5 month entocort user. If your stool is consistently solid and firm you might consider a step down. I think I was 3 weeks, 3 pills, 3 weeks 2 pills then very long time periods at lower dosages. We're all very different however. You might consider a week or two at one day 2 pills, 1 pill next day, 2 pills next day etc every other day then go to 1 pill every day. (I didn't do that however---I just went from 2 pills to 1 pill) The jump from 2 pills to 1 seems to be problematic for a lot of users. Recommend extremely long slow taper off at low end. For me that looked like 4 weeks 1 pill, 4 weeks 1 every other day, 4 weeks every third day etc.
Re: Weight and Entocort. Entocort didn't cause me to gain weight per se. I flat out ate a lot more while on Entocort. 5'7--my lowest weight was 124 lbs pre Entocort. I went back to 139 pounds while on Entocort but I was eating a lot. Since getting off of Entocort I have to kind of struggle to maintain my weight. Yesterday I was 136. I guess what I'm trying to say if you can get to a maintenance weight while on Entocort it is not a bad thing....my experience is that I'm kind of struggling to maintain weight post Entocort.
Congratulations on the job! It sounds wonderful.
Brandy
I was a 4.5 month entocort user. If your stool is consistently solid and firm you might consider a step down. I think I was 3 weeks, 3 pills, 3 weeks 2 pills then very long time periods at lower dosages. We're all very different however. You might consider a week or two at one day 2 pills, 1 pill next day, 2 pills next day etc every other day then go to 1 pill every day. (I didn't do that however---I just went from 2 pills to 1 pill) The jump from 2 pills to 1 seems to be problematic for a lot of users. Recommend extremely long slow taper off at low end. For me that looked like 4 weeks 1 pill, 4 weeks 1 every other day, 4 weeks every third day etc.
Re: Weight and Entocort. Entocort didn't cause me to gain weight per se. I flat out ate a lot more while on Entocort. 5'7--my lowest weight was 124 lbs pre Entocort. I went back to 139 pounds while on Entocort but I was eating a lot. Since getting off of Entocort I have to kind of struggle to maintain my weight. Yesterday I was 136. I guess what I'm trying to say if you can get to a maintenance weight while on Entocort it is not a bad thing....my experience is that I'm kind of struggling to maintain weight post Entocort.
Congratulations on the job! It sounds wonderful.
Brandy
Hi Brandy,
Yes I did 6 weeks of 3 pills and have weaned down to 6 weeks of 2 pills. By the time I ended the 6 weeks of 3 pills I was noticing very harsh C the last couple weeks. Sometimes would go 3 days without going and then a big day of going 3 or 4 times. Since on 2 pills I am pretty regular but it is no longer a 4 on the chart. It is softer but still formed..........no D(except when I ate something that did NOT agree with me and that took 1 day to get over). After my 6 weeks of 2 pills I am suppose to take 1 pill for 6 weeks so that's close to the amount of time you were talking about. However I just wondered about trying to slow down and go every other day but I'm almost scared to because of how the weaning off has affected others. I think I might try the 2 pills one day and then 1 pill the next day for a while and se what happens. I have noticed a large appetite since being on entocort and I don't want to regain the weight. I lost 60lbs and needed to but since then have been able to go off some type II diabetes meds and blood pressure meds. He is going to do another blood test in Dec to see if I can be removed from the rest of the meds as well. I showed HUGE improvements and want to keep it that way. If I put the weight back on I'm afraid I will have to go back on meds again. So I'm trying desperately and thinking if I go back to work part time then I won't be sitting around the house bored and wanting to eat. Thanks for the advice and I will give it a try.
Tex,
They did a thyroid test when they were checking to find out my initial dx. I went through a battery of tests before the colonoscopy and the CC dx. Thyroid was fine then. I'm gonna try to start the weaning and see what happens.Heck I've bought all new clothes that fit and I don't want to out grow them now!!!!
And the engineer thing......maybe there is so many of us on here because we have sat on our butts to long at our jobs.........lol
Yes I did 6 weeks of 3 pills and have weaned down to 6 weeks of 2 pills. By the time I ended the 6 weeks of 3 pills I was noticing very harsh C the last couple weeks. Sometimes would go 3 days without going and then a big day of going 3 or 4 times. Since on 2 pills I am pretty regular but it is no longer a 4 on the chart. It is softer but still formed..........no D(except when I ate something that did NOT agree with me and that took 1 day to get over). After my 6 weeks of 2 pills I am suppose to take 1 pill for 6 weeks so that's close to the amount of time you were talking about. However I just wondered about trying to slow down and go every other day but I'm almost scared to because of how the weaning off has affected others. I think I might try the 2 pills one day and then 1 pill the next day for a while and se what happens. I have noticed a large appetite since being on entocort and I don't want to regain the weight. I lost 60lbs and needed to but since then have been able to go off some type II diabetes meds and blood pressure meds. He is going to do another blood test in Dec to see if I can be removed from the rest of the meds as well. I showed HUGE improvements and want to keep it that way. If I put the weight back on I'm afraid I will have to go back on meds again. So I'm trying desperately and thinking if I go back to work part time then I won't be sitting around the house bored and wanting to eat. Thanks for the advice and I will give it a try.
Tex,
They did a thyroid test when they were checking to find out my initial dx. I went through a battery of tests before the colonoscopy and the CC dx. Thyroid was fine then. I'm gonna try to start the weaning and see what happens.Heck I've bought all new clothes that fit and I don't want to out grow them now!!!!
And the engineer thing......maybe there is so many of us on here because we have sat on our butts to long at our jobs.........lolCathy
Hi Cathy,
One thing that is easy to overlook when taking Entocort with good results (i.e. D is resolved and feeling so much better) and maintaining a gluten free diet, is that most of the "gluten free" products on the market also are rather calorie dense.
It is so exciting to find things such as Udi's muffins etc. that can be used in place of our good old bakery items, that it is easy to over-do it and over-indulge with these foods. Personally, if I have something like this at home, it is kept in the way-back area of the freezer, and only comes out a couple times a month as a treat.
I bet going back to work will get you away from the temptation of eating as much so you will be better able to curb some of the extra calorie consumption.
Personally, I would hold to the taper routine you are on (Why mess with success?) unless you are now at a point of C now being the ruling demon. In that case a small taper might be OK for you. An occasional missed dose such as you have described at this point in your treatment will have no effect due to the failry long half life of the drug itself. So don't let this small event mess with your mind.
Bet you will enjoy getting back out to work.
Gayle
One thing that is easy to overlook when taking Entocort with good results (i.e. D is resolved and feeling so much better) and maintaining a gluten free diet, is that most of the "gluten free" products on the market also are rather calorie dense.
It is so exciting to find things such as Udi's muffins etc. that can be used in place of our good old bakery items, that it is easy to over-do it and over-indulge with these foods. Personally, if I have something like this at home, it is kept in the way-back area of the freezer, and only comes out a couple times a month as a treat.
I bet going back to work will get you away from the temptation of eating as much so you will be better able to curb some of the extra calorie consumption.
Personally, I would hold to the taper routine you are on (Why mess with success?) unless you are now at a point of C now being the ruling demon. In that case a small taper might be OK for you. An occasional missed dose such as you have described at this point in your treatment will have no effect due to the failry long half life of the drug itself. So don't let this small event mess with your mind.
Bet you will enjoy getting back out to work.
Gayle
Hi Gayle,
Yep been there done that with Udi's muffins but I quit that fairly quick. They are delicious but........if I ate one for breakfast then it would be one for lunch dessert (hahaha) then one for supper dessert, and then the next morning hhhhmmmm only one left in pkg might as well eat it. And of course I had to try all flavors. They are NOT cheap either. I've found that the betty crocker mixes do better for me because they are cheaper and I replace some of the butter amount with applesauce. Plus I know some people b$%&h because they make smaller cakes but I actually prefer that because a big 9X13 cake would get wasted. My grandkids love them too so that helps because they will eat some of it. Gotta catch them at the right time on Amazon and you can get 6 mixes wwwwaaaayyyy cheaper than buying them at the store. Sometimes the sale was on the yellow cake mixes, sometimes the chocolate, sometimes the brownies. You really have to just keep checking to catch them on sale. So I have stocked up on all.
Yea I think I will try the every other day 2 pills then 1 pill thing and maybe I can do that for a longer period of time. I'd like to be off of it but I am scared to go off of it. I'll let you know what I find out/figure out.
Yep been there done that with Udi's muffins but I quit that fairly quick. They are delicious but........if I ate one for breakfast then it would be one for lunch dessert (hahaha) then one for supper dessert, and then the next morning hhhhmmmm only one left in pkg might as well eat it. And of course I had to try all flavors. They are NOT cheap either. I've found that the betty crocker mixes do better for me because they are cheaper and I replace some of the butter amount with applesauce. Plus I know some people b$%&h because they make smaller cakes but I actually prefer that because a big 9X13 cake would get wasted. My grandkids love them too so that helps because they will eat some of it. Gotta catch them at the right time on Amazon and you can get 6 mixes wwwwaaaayyyy cheaper than buying them at the store. Sometimes the sale was on the yellow cake mixes, sometimes the chocolate, sometimes the brownies. You really have to just keep checking to catch them on sale. So I have stocked up on all.
Yea I think I will try the every other day 2 pills then 1 pill thing and maybe I can do that for a longer period of time. I'd like to be off of it but I am scared to go off of it. I'll let you know what I find out/figure out.
Cathy
I'll have to admit that I've become bad about that during the past few years, (I'm mostly retired now), but prior to the onset of my symptoms, many of us were extremely active. We seem to have a surprising number of marathon runners and other serious athletes on this board, who have always been dedicated to living a far healthier lifestyle than the general population.Cathy wrote:And the engineer thing......maybe there is so many of us on here because we have sat on our butts to long at our jobs.........lol
It appears that a relatively high percentage of the membership could be classified as overachievers and/or perfectionists. I have a hunch that this correlates with my opinion that chronic stress is a primary prerequisite for the development of MC.
Of course, after dealing with MC for a few years, many of us tend to rearrange our priorities, and downshift a gear or two as we realize that there may be more to life than overachieving and practicing perfectionism.
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.
Interesting theory Tex. I was thinking that the people on this board seem more "over achiever" like because we are the type who would seek out the info on our own and actually will follow a more strict diet to achieve remission. I work with people who are the opposite and can't believe I have changed how I eat so drastically. Many of my clients can't even cut back on sugar.
Cathy, You are the best judge of how you feel and if you feel that you'd like to try a lower dose, then you should. I agree with the two pill/one pill plan. It's exactly what I did. I probably did it for 2-3 weeks until I found that I could go down to one a day. Every BM wasn't perfect, but it was a good time to see if I was reacting to certain foods. The drug tends to hide that.
On the weight gain.... Carbs. Watch the carbs. If you aren't burning off the amount you are eating, you will gain weight. If you stick to a more protein/veg diet, the weight won't pile on.( Sometimes the personal trainer in me comes out)
Let us know how it goes.
Leah
Cathy, You are the best judge of how you feel and if you feel that you'd like to try a lower dose, then you should. I agree with the two pill/one pill plan. It's exactly what I did. I probably did it for 2-3 weeks until I found that I could go down to one a day. Every BM wasn't perfect, but it was a good time to see if I was reacting to certain foods. The drug tends to hide that.
On the weight gain.... Carbs. Watch the carbs. If you aren't burning off the amount you are eating, you will gain weight. If you stick to a more protein/veg diet, the weight won't pile on.( Sometimes the personal trainer in me comes out)
Let us know how it goes.
Leah
I participated in the Stanford Protocol for pelvic pain many years ago and the one thing we reportedly all had in common at the therapy sessions was we were all type A personalities. I asked the physical therapist about those that come to the protocol with chronic pelvic pain and he said, "if I were to start a business, I would want to hire each one of you".
I am not sure this is a good thing, so I have learned about myself.
So I think Leah and Tex are spot on.
I am not sure this is a good thing, so I have learned about myself.
So I think Leah and Tex are spot on.
"It's not what I believe. It's what I can prove." - A Few Good Men
Cathy,
I agree with Brandy and Leah. I'm presently on the 2-2-1 dosage and am having perfect Normans most days. My next reduction will be to a 2-1-2-1 dosage. After that, I'll probably go to a 1-1-2 dosage. As you can see, I am planning on tapering very slowly. I'm not planning on going completely off of it anymore. I can't take the risk that it will stop working completely for me if I lose my remission.
I have found that Entocort has a fairy long residual effect, like Gayle mentioned. If we taper too suddenly, the residual reduction won't catch up to the dosage reduction for several weeks. We think we're doing fine, but suddenly we relapse, and it's because Entocort was still in our system for several weeks.
There are a few reasons for the long tapering. One is to allow our bodies to slowly adjust to the lowered suppression of our histamine levels. This is Tex's theory, but it makes sense to me. Secondly, the slow tapering will tell us if we're going to react to additional foods. Entocort should always be viewed as a tool to help us determine our intolerances while still living a normal life. Third, we want to know if we're going to have problems before we get completely off Entocort. It's been mentioned before on the board that the more times you go off Entocort, the less effective it becomes when you go back on it. I can vouch for that. It's better to catch problems before you're completely off of it.
My slow tapering is because I have many sensitivities. Several people here were able to taper and get off of Entocort without many problems. We won't know which category we're in until we're completely off of it.
I've never found that Entocort has caused me to gain weight. When my diet was more varied, I weighed the same while taking Entocort. Now that I'm on a very limited diet, my weight is 23 lbs. less than it was before MC. It may be that you are gaining weight because you are absorbing more nutrients and calories from the food you're eating. But it's also possible that Entocort has caused you to gain weight. We are all different. Perhaps a poll should be taken on the weight issue while taking Entocort.
Good luck with your tapering.
Gloria
I agree with Brandy and Leah. I'm presently on the 2-2-1 dosage and am having perfect Normans most days. My next reduction will be to a 2-1-2-1 dosage. After that, I'll probably go to a 1-1-2 dosage. As you can see, I am planning on tapering very slowly. I'm not planning on going completely off of it anymore. I can't take the risk that it will stop working completely for me if I lose my remission.
I have found that Entocort has a fairy long residual effect, like Gayle mentioned. If we taper too suddenly, the residual reduction won't catch up to the dosage reduction for several weeks. We think we're doing fine, but suddenly we relapse, and it's because Entocort was still in our system for several weeks.
There are a few reasons for the long tapering. One is to allow our bodies to slowly adjust to the lowered suppression of our histamine levels. This is Tex's theory, but it makes sense to me. Secondly, the slow tapering will tell us if we're going to react to additional foods. Entocort should always be viewed as a tool to help us determine our intolerances while still living a normal life. Third, we want to know if we're going to have problems before we get completely off Entocort. It's been mentioned before on the board that the more times you go off Entocort, the less effective it becomes when you go back on it. I can vouch for that. It's better to catch problems before you're completely off of it.
My slow tapering is because I have many sensitivities. Several people here were able to taper and get off of Entocort without many problems. We won't know which category we're in until we're completely off of it.
I've never found that Entocort has caused me to gain weight. When my diet was more varied, I weighed the same while taking Entocort. Now that I'm on a very limited diet, my weight is 23 lbs. less than it was before MC. It may be that you are gaining weight because you are absorbing more nutrients and calories from the food you're eating. But it's also possible that Entocort has caused you to gain weight. We are all different. Perhaps a poll should be taken on the weight issue while taking Entocort.
Good luck with your tapering.
Gloria
You never know what you can do until you have to do it.
I am late commenting on this post but found it searching for tapering ideas/tips. (Although I probably am not there yet but my pocketbook is quickly motivating me to think in those terms. ;) ). But I found this to be an interesting discussion regarding high stress and over-achievers. Someone should do a study on that!
I've also wondered if autoimmune issues could be caused by genetic mutations--sort of a genetic entropy. After all the time we humans have been on earth, reproducing, cellular copying mistakes happen. We see the effects of genetic mutations in things such as down syndrome and other genetic disorders. Could autoimmune issues be similar, like perhaps our cells lack a "turn-off" function?
An interesting thought, perhaps.
I've also wondered if autoimmune issues could be caused by genetic mutations--sort of a genetic entropy. After all the time we humans have been on earth, reproducing, cellular copying mistakes happen. We see the effects of genetic mutations in things such as down syndrome and other genetic disorders. Could autoimmune issues be similar, like perhaps our cells lack a "turn-off" function?
An interesting thought, perhaps.
Studies have been done, but it turns out that underachievers are actually under more stress than their supervisors, in most cases. The key to the stress problem is one's perception of control. If we feel that we are in control, then no matter how bad things might appear to be, we are subject to far less stress than those who feel that they have no control over their situation. You can get detailed information about that in the article at the following link:Jennifer wrote:But I found this to be an interesting discussion regarding high stress and over-achievers. Someone should do a study on that!
http://www.wired.com/magazine/2010/07/ff_stress_cure/
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 been on entocort for about a year now and have difficulties going lower than 3mg/day. I've tried skipping one every other day and it doesn't work for me. I'm playing with a 3/3/0 rotation right now but am really holding off to find out the results of my Enterolab results. Hopefully that will give me the info I need to get Norman as a regular visitor. I cannot keep Norman in the house at a 3mg dose. I still have more WD than solids but I am ok with that since its around 4x in the morning then I'm good for the day. It's debateable if this is the best course to follow but I simply want off the drug but don't want to chance going off and having it loose its effectiveness the next try. I've also been plagued with some nasty eye pain and sinus issues that have made the D pretty tolerable. My Acupunture treatments have shown promise and with my Enterolab results on the way I'm hoping to make some real progress.
When it boils down to it, there's no one way to go since the taper works differently for each of us. My gut feeling generally trumps everything else. The biggest help is to read through everyone's experiences and someone's success will stick with you as the option to try. Sometimes it works and sometime it doesn't. At least there's always more options to choose from! Good luck with the taper and the new job. Sometimes it help to have a reason to get moving in the morning.
When it boils down to it, there's no one way to go since the taper works differently for each of us. My gut feeling generally trumps everything else. The biggest help is to read through everyone's experiences and someone's success will stick with you as the option to try. Sometimes it works and sometime it doesn't. At least there's always more options to choose from! Good luck with the taper and the new job. Sometimes it help to have a reason to get moving in the morning.
Cathy, I weaned off of Entocort over several months. I had one problematic period when I stopped it too abruptly right around the time my mother died. I went back on it, tapered more slowly and carefully, and have been feeling mostly good. Based on my experience, it isn't realistic to think that you will ever again have consistently "perfect" poo. Like someone else said, I'm satisfied with knowing I can get out of the house in the morning after 3-4 visits to the bathroom and feel safe, no matter what I see in the bowl.
I am so interested in the relationship between stress/type A personality and onset of MC. I am an oldest child of five, definite perfectionistic high achiever, with a few OCD-ish sorts of behaviors. I was, for 35 years, a teacher, mostly at middle school level, and who needs to exert more control over their daily environment than a teacher of 12-14 year olds, LOL? I had a couple of digestive episodes while I was still teaching, notably when I quit smoking in 2007, and again when, as president of the teachers union, I was trying to negotiate a fair contract in the aftermath of the 2008 economic crash. Then I retired in 2010, and was all involved in my daughter's wedding 4 months later. Once that was over, came the holidays. They were over, and in January all hell broke loose. I have to believe it is no coincidence.
I am so interested in the relationship between stress/type A personality and onset of MC. I am an oldest child of five, definite perfectionistic high achiever, with a few OCD-ish sorts of behaviors. I was, for 35 years, a teacher, mostly at middle school level, and who needs to exert more control over their daily environment than a teacher of 12-14 year olds, LOL? I had a couple of digestive episodes while I was still teaching, notably when I quit smoking in 2007, and again when, as president of the teachers union, I was trying to negotiate a fair contract in the aftermath of the 2008 economic crash. Then I retired in 2010, and was all involved in my daughter's wedding 4 months later. Once that was over, came the holidays. They were over, and in January all hell broke loose. I have to believe it is no coincidence.
Suze