Hello friends,
And I do mean friends..........we seem to be in the same boat.....grab an oar and keep rowing. Do I see land? I am not sure.
Anyone else out there with advice?
This is supposed to be my last full week of the full Endocort 9mg per day. Well 9mg. seems to be too much. It makes me so jittery. So I cut back to 6mg...........and then three
for the last couple days.
I see symptoms.
This is never going to end.
Any comments or advice?
Entocort weaning..advice needed
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Weaning off Entocort without relapsing is not easy. The trick is to have your diet perfected long before you begin lowering the dosage, and taper the dose very, very slowly, especially when you get to the lower dosages. If you already have symptoms, you tapered the dose way too fast. Dropping to 6mg per day is no big deal, but dropping to 3mg and below has to be done very slowly to prevent a relapse of symptoms.
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.
Re: Entocort weaning..advice needed
.....Camie wrote:Hello friends,
And I do mean friends..........we seem to be in the same boat.....grab an oar and keep rowing. Do I see land? I am not sure.
Anyone else out there with advice?
This is supposed to be my last full week of the full Endocort 9mg per day. Well 9mg. seems to be too much. It makes me so jittery. So I cut back to 6mg...........and then three
for the last couple days.
I see symptoms.
This is never going to end.
Any comments or advice?
Hi Camie,
How long were you on the Entocort? I too have had trouble weaning off the drug, even with major changes to my diet. I was able to get down to 1-3mg pill every 5-6 days but am back on it daily as I've had a flare up since the beginning of this month. I know that Leah has been successful @ going off the drug. Have you changed your diet? I would agree with Tex to taper off very slowly and see how you do with it. Good luck to you and I know exactly what you mean about never ending!!!
I've been "stuck" at the 3mg dose/day for what seems like forever. I've tried every other day and supplementing it with immodium without success. I'm back to the 3mg/day but still have D & WD issues. I don't want to go back to a higher dose but am not sure if that choice is the best either. I'm at day two of a strictly Paleo diet in hopes to see some sort of improvement. I'm not feeling to happy about it since corn and rice helped bulk up my meat and veggie diet. I'm rather perplexed right now because if I eliminate the high histamine foods too I feel just plain screwed. I'm trying to figure out how potatoes fit into the picture. I've been skipping breakfast since my Chex cereals are out. So far it's been meat, squash, carrots, and coconut. I was hoping for overnight miracle and still had WD this morning. I know better than to expect immediate results but I was still hoping for some glimmer of hope.
I don't know if I should up the dose to stop the D but if it slows the healing I'd rather give up more food since meal time has ceased to be pleasurable anyway.
Move over Camie- I'll grab an oar in your boat! It's at least nice to have good company.
I don't know if I should up the dose to stop the D but if it slows the healing I'd rather give up more food since meal time has ceased to be pleasurable anyway.
Move over Camie- I'll grab an oar in your boat! It's at least nice to have good company.
You are welcome in my boat anytime!..
I have been on Endocort for almost eight weeks. I was lucky (yeah lucky) to have the DX of MC on the first colonoscopy.
I had a relief with WD within a week. I found that 9mg was making me too jittery and unable to sleep. So I reduced to 6mg. I am supposed to reduce to 3mg for two weeks and then wait and see. Three days of 3mg and I see symptoms.......sigh.... Not ready to wean. And I don't think that is enough time on Endocort anyway.
I have been dairy free for years. I keep trying Gluten free but I transgress frequently. Going to try again and soy too. But truthfully I eat so little of anything, I can't imagine what could possibly be triggerring my stomach.
I liked the comment meal time has ceased to be pleasurable. So very true. Eating has become a task.
The endocort does make it better.
Ok...........thanks for your ears.
:)
hugs
I have been on Endocort for almost eight weeks. I was lucky (yeah lucky) to have the DX of MC on the first colonoscopy.
I had a relief with WD within a week. I found that 9mg was making me too jittery and unable to sleep. So I reduced to 6mg. I am supposed to reduce to 3mg for two weeks and then wait and see. Three days of 3mg and I see symptoms.......sigh.... Not ready to wean. And I don't think that is enough time on Endocort anyway.
I have been dairy free for years. I keep trying Gluten free but I transgress frequently. Going to try again and soy too. But truthfully I eat so little of anything, I can't imagine what could possibly be triggerring my stomach.
I liked the comment meal time has ceased to be pleasurable. So very true. Eating has become a task.
The endocort does make it better.
Ok...........thanks for your ears.
:)
hugs
Hi Camie. Since I have been pretty successful weaning off, I will give you my advice. YOU MUST STOP ALL GLUTEN NOW! Gluten anti bodies have such a long life in your system that it's the one food you just can't "cheat" on.
Okay, I think I was successful so far for a these reasons.
1. I first went GF and DF right away. No turning back. So I took out the big inflammatory offenders.
2. I also took out the "irritants" ( raw fruits and veggies, acid foods, beans, many vegetable oils, nightshades) and didn't eat processed GF products either.
3. I took 9 mg. until I was slightly constipated ( about two month). I then dropped down to 6mg. until the same thing happened ( another two months). This is when I realized I was reacting to soy and removed it.
4.When I stepped down to 3mg, I did it more slowly. I took 6mg. one day and 3mg. the next and so forth for about two weeks. Stayed on 3mg. a day for about 1 month
5. I did let my BM get loose and sometimes watery, but kept my dose the same as long as I was only going once a day
6.I SLOWLY stepped down from there as long as I was still going only once a day. That's when I started "testing" the irritants and was happy to be able to add some back in. That meant I was healing! If I got watery, I knew I was reacting to something I was testing.
7.The whole process took about 6 months.
8. Last peice of the puzzle was trying an antihistamine. It worked and that is what finally took my once a day BM to norman.
End of my fairy tale. :) You are right, it all takes longer than 8 weeks, but it also depends on you sticking to the diet plan. You must give your gut a chance to heal.
Good luck and keep us posted
Leah
Okay, I think I was successful so far for a these reasons.
1. I first went GF and DF right away. No turning back. So I took out the big inflammatory offenders.
2. I also took out the "irritants" ( raw fruits and veggies, acid foods, beans, many vegetable oils, nightshades) and didn't eat processed GF products either.
3. I took 9 mg. until I was slightly constipated ( about two month). I then dropped down to 6mg. until the same thing happened ( another two months). This is when I realized I was reacting to soy and removed it.
4.When I stepped down to 3mg, I did it more slowly. I took 6mg. one day and 3mg. the next and so forth for about two weeks. Stayed on 3mg. a day for about 1 month
5. I did let my BM get loose and sometimes watery, but kept my dose the same as long as I was only going once a day
6.I SLOWLY stepped down from there as long as I was still going only once a day. That's when I started "testing" the irritants and was happy to be able to add some back in. That meant I was healing! If I got watery, I knew I was reacting to something I was testing.
7.The whole process took about 6 months.
8. Last peice of the puzzle was trying an antihistamine. It worked and that is what finally took my once a day BM to norman.
End of my fairy tale. :) You are right, it all takes longer than 8 weeks, but it also depends on you sticking to the diet plan. You must give your gut a chance to heal.
Good luck and keep us posted
Leah
Camie- Leah is right, it does take time and is so frustrating. I've been strictly GF/DF for about 10 months and I'm still waiting for my fairy tale ending. I've also been SF/EF for about 7 months now and had occassional foods with soy only to regret it after I got a stomach ache. I'm at the point now where it's just not worth being stubborn about my "I love you & won't give you up" foods. Three days in a row I ate one of my favorites (and just a little bit because it would be ok in moderation 
) only to get sick each time. The forth time back to the cupboard I decided I either had to throw it out and not let the rest of my family enjoy or stop being stupid since I knew darn well I can't eat it. I've also eliminated legumes and all processed foods from the menu along with attempting to stay away from high histamine foods.
My point is, I envy Leah for making it sound so simple, but hind sight makes the trials and errors a piece of cake. I'm frustrated, disappointed, angry... that after the time I've put into this I'm not where I want to be but I read and re-read real life stories here and know it is possible for me and may take longer than some. I would have never continued with this type of eating without the support from the wonderful people here. Like I've said earlier, I coasted through the summer with my restricted diet and accepted good enough for now poops but now I've had enough. Obviously something is still not right because I should have at least some healing going on here so today is day three of a strictly Paleo diet and I don't care for it at all but it may be what it takes to get closer to managing this. I never would have thought I could eliminate ALL grains and I chuckle that I whined before that I already had nothing to eat. It's best to laugh if you can and try not to be too negative because it just spirals into other problems. Last night was a hard night when i made lasagna and garlic bread for my husband and then sat down to squash and hamburger for myself. I decided to let myself pout for 10 minutes then get over it so I wouldn't ruin the rest of the evening.
I also look back to a year ago and where I was at (almost dead) and humbly realize I'm a very impatient and demanding person who is learning many lessons on this very difficult journey.
) only to get sick each time. The forth time back to the cupboard I decided I either had to throw it out and not let the rest of my family enjoy or stop being stupid since I knew darn well I can't eat it. I've also eliminated legumes and all processed foods from the menu along with attempting to stay away from high histamine foods.My point is, I envy Leah for making it sound so simple, but hind sight makes the trials and errors a piece of cake. I'm frustrated, disappointed, angry... that after the time I've put into this I'm not where I want to be but I read and re-read real life stories here and know it is possible for me and may take longer than some. I would have never continued with this type of eating without the support from the wonderful people here. Like I've said earlier, I coasted through the summer with my restricted diet and accepted good enough for now poops but now I've had enough. Obviously something is still not right because I should have at least some healing going on here so today is day three of a strictly Paleo diet and I don't care for it at all but it may be what it takes to get closer to managing this. I never would have thought I could eliminate ALL grains and I chuckle that I whined before that I already had nothing to eat. It's best to laugh if you can and try not to be too negative because it just spirals into other problems. Last night was a hard night when i made lasagna and garlic bread for my husband and then sat down to squash and hamburger for myself. I decided to let myself pout for 10 minutes then get over it so I wouldn't ruin the rest of the evening.
I also look back to a year ago and where I was at (almost dead) and humbly realize I'm a very impatient and demanding person who is learning many lessons on this very difficult journey.
DebE,
That's a very eloquent post. All of us who have been through that experience and have been successful at conquering the demon, totally understand what you're saying. In hindsight, everything seems logical, but while we're actually going through it, it tends to be a very frustrating, depressing, aggravating, and at times, scary experience. We never know what tomorrow will bring, and uncertainty is one of the main contributors to stress, anxiety, and depression, which of course, just make the the symptoms worse. It takes real dedication, perseverence, and sacrifice, but history shows that those attributes are almost always the keys to success in any major project, and projects don't come any more major than controlling the symptoms of MC.
Thanks for reminding us of the reality of the situation. You'll get there, because in the long run, motivation always trumps ambivalence.
Tex
That's a very eloquent post. All of us who have been through that experience and have been successful at conquering the demon, totally understand what you're saying. In hindsight, everything seems logical, but while we're actually going through it, it tends to be a very frustrating, depressing, aggravating, and at times, scary experience. We never know what tomorrow will bring, and uncertainty is one of the main contributors to stress, anxiety, and depression, which of course, just make the the symptoms worse. It takes real dedication, perseverence, and sacrifice, but history shows that those attributes are almost always the keys to success in any major project, and projects don't come any more major than controlling the symptoms of MC.
Thanks for reminding us of the reality of the situation. You'll get there, because in the long run, motivation always trumps ambivalence.
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 Camie,
Both DEb13 and Leah have extremely valid points so I'll talk about Entocort usage but believe me both Deb13 and Leah are right on target.
It looks like you have been on Entocort for 8 weeks and I'm guessing your Dr. wants you off in two more weeks? As a 4.5 month Entocort user I can tell you that 10 weeks for the vast majority of us is not enough time. History of this board tells us that 4.5 months to 6 months is going to be most effective although it may take some of us 9 months or more on Entocort. At the low end you want an extremely long slow taper off for most effectiveness. For example at the low end I was 3 mg every other day for a month then 3 mg every third day for a month. I was really not in that great of shape at 4.5 months but could flat out no longer take the dizziness side effect otherwise it probably would have been better for me to have been on it longer.
The 3 month period that most GI docs prescribe for may bring risk of relapse. Also note that getting off of Entocort without going GF brings high risk of relapse. I think we have several members that were prescribed Entocort, went thru the Entocort thing, were not GF and then their doctor told them to get off and then they relapsed within two weeks and then they subsequently found us on google search and had to start again.
I was in huge denial when I found this board and it took me awhile to wrap my mind around things. The vast majority of GI docs practicing flat out do not get the diet connection. GI doc #1 told me diet didn't matter (he also told me fatigue did not exist, yea right). GI doc #2 sent me two emails to tell me to go GF for 8-10 weeks. She is much more on top of the research re: this disease.
It does get better.....re: the fairy tale ending. I just got back from a 3 day biz trip to Chicago and the restaurant staff at my downtown Chicago hotel restaurant treated me like a princess! Thanks Ant for the restaurant instruction guide. Three levels of supervisors kept coming around to make sure I was ok. It felt very "princessy".
Brandy
Both DEb13 and Leah have extremely valid points so I'll talk about Entocort usage but believe me both Deb13 and Leah are right on target.
It looks like you have been on Entocort for 8 weeks and I'm guessing your Dr. wants you off in two more weeks? As a 4.5 month Entocort user I can tell you that 10 weeks for the vast majority of us is not enough time. History of this board tells us that 4.5 months to 6 months is going to be most effective although it may take some of us 9 months or more on Entocort. At the low end you want an extremely long slow taper off for most effectiveness. For example at the low end I was 3 mg every other day for a month then 3 mg every third day for a month. I was really not in that great of shape at 4.5 months but could flat out no longer take the dizziness side effect otherwise it probably would have been better for me to have been on it longer.
The 3 month period that most GI docs prescribe for may bring risk of relapse. Also note that getting off of Entocort without going GF brings high risk of relapse. I think we have several members that were prescribed Entocort, went thru the Entocort thing, were not GF and then their doctor told them to get off and then they relapsed within two weeks and then they subsequently found us on google search and had to start again.
I was in huge denial when I found this board and it took me awhile to wrap my mind around things. The vast majority of GI docs practicing flat out do not get the diet connection. GI doc #1 told me diet didn't matter (he also told me fatigue did not exist, yea right). GI doc #2 sent me two emails to tell me to go GF for 8-10 weeks. She is much more on top of the research re: this disease.
It does get better.....re: the fairy tale ending. I just got back from a 3 day biz trip to Chicago and the restaurant staff at my downtown Chicago hotel restaurant treated me like a princess! Thanks Ant for the restaurant instruction guide. Three levels of supervisors kept coming around to make sure I was ok. It felt very "princessy".
Brandy
Deb, if I made this process seem easy, I'm sorry. Because it was no way easy and continues to be challenging. Just last night I made myself a larger than usual salad ( thinking "i just really want a huge salad. I miss them"). I seem to be able to handle "some " salad, but obviously since the WD hit me this morning, I'm guessing it was not a wise choice. Everything else I put it it was my normal stuff ( including some steak). Lesson learned.
Anyway, to say this is easy is not what I intended. The difference with this WD though is that I'm pretty sure it is temporary and in a couple of days.... if I watch what I eat... my BM will slowly get more solid. i believe this is a life long process, but I'm in such a better place than where I was months ago. We should keep reminding yourselves of how far we have come- even if we are not where we want to be yet. :)
PS Deb, you are a saint for making lazagna for your husband. Mine is eating much like me for dinner, but I give him bread or potatoes to go with whatever we are having.
Leah
Anyway, to say this is easy is not what I intended. The difference with this WD though is that I'm pretty sure it is temporary and in a couple of days.... if I watch what I eat... my BM will slowly get more solid. i believe this is a life long process, but I'm in such a better place than where I was months ago. We should keep reminding yourselves of how far we have come- even if we are not where we want to be yet. :)
PS Deb, you are a saint for making lazagna for your husband. Mine is eating much like me for dinner, but I give him bread or potatoes to go with whatever we are having.
Leah
Oh Leah, I didn't interpret your post to mean it's easy at all. I know that it is a life long struggle for everyone but I was just frustrated because I'm not at the point you are right now and would so very much like to be there. You're words are encouraging. I always remind myself that success stories are sumarized and so it seems so easy once you've gotten there. It's too bad that the trial and error will never stop, it seems if we've struggled so hard the prize at the finish line should be total preMC health. I've always been a dreamer. 
It's so nice to have ideas of what works for others with MC but at the same time can be like hitting a brick wall when it doesn't work for me. Sometimes I just want to jump up and down and stomp my feet (actually, I've done it before when no one else is around) because I'm ticked the controlling technique worked for someone else and not me. It's more anger directed at my own body for not doing right by me when I'm trying so hard. I love to read the success stories because I spent almost five years fumbling around in the dark and wasted a ton of money trying to figure out what to do on my own. I was headed in the right direction but would have never made it on the right path without the guidance from everyone here. Until you dive into this forum, you have no clue how absolutely committed you have to be to regain health.
I don't have the enthusiasm for cooking I once had but if you'd see the looks I get around the dinner table when they see what I eat, it's actually kind of funny. My husband is accustomed to getting dirty looks from me across thetable when I look at his plate and then mine- he doesn't take it personally anymore. However, I am having more and more guilt about feeding him foods that aren't good for him. He laughs at me but I almost feel like I'm contributing to wrecking his health. Ignorance was bliss.
It's so nice to have ideas of what works for others with MC but at the same time can be like hitting a brick wall when it doesn't work for me. Sometimes I just want to jump up and down and stomp my feet (actually, I've done it before when no one else is around) because I'm ticked the controlling technique worked for someone else and not me. It's more anger directed at my own body for not doing right by me when I'm trying so hard. I love to read the success stories because I spent almost five years fumbling around in the dark and wasted a ton of money trying to figure out what to do on my own. I was headed in the right direction but would have never made it on the right path without the guidance from everyone here. Until you dive into this forum, you have no clue how absolutely committed you have to be to regain health.
I don't have the enthusiasm for cooking I once had but if you'd see the looks I get around the dinner table when they see what I eat, it's actually kind of funny. My husband is accustomed to getting dirty looks from me across thetable when I look at his plate and then mine- he doesn't take it personally anymore. However, I am having more and more guilt about feeding him foods that aren't good for him. He laughs at me but I almost feel like I'm contributing to wrecking his health. Ignorance was bliss.
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Gabes-Apg
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depending on how long you had symptoms prior to Dx, any other health issues you have going on, will be elements as to how long it can take for the gut to heal.
for the almost 3 years I have been on this forum, only about 1/4 of people get great MC management within 3 6 months. some are 12 months, some are 2 years and then some are on small doses of entocort for years.
we are all different and it takes time and patience and courage to figure out your MC management plan (and handle the waves that will rock the boat!! so I hope you have a life jacket)
(couldnt find an emoticon with a boat...........)
It is really important that eating does not become a chore, for effective digestion to happen and the chemistry be right to absorb nutrients, we have to look forward to the meal. You need those nutrients to be well!
otherwise you are increasing the inflammation and inflammation = WD
wishing you calm waters and you pull up on land soon!
for the almost 3 years I have been on this forum, only about 1/4 of people get great MC management within 3 6 months. some are 12 months, some are 2 years and then some are on small doses of entocort for years.
we are all different and it takes time and patience and courage to figure out your MC management plan (and handle the waves that will rock the boat!! so I hope you have a life jacket)
(couldnt find an emoticon with a boat...........)It is really important that eating does not become a chore, for effective digestion to happen and the chemistry be right to absorb nutrients, we have to look forward to the meal. You need those nutrients to be well!
otherwise you are increasing the inflammation and inflammation = WD
wishing you calm waters and you pull up on land soon!
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
@DebE....I make my husband and kid the same meals I always have and just want to cry when I sit at the table and watch them eating the good stuff and me with my usual meat, squash, carrots and rice. I do make GF pasta sometimes. Some days it's hard but some days it isn't. I find myself resenting (or maybe just envious) my husband cause he gets to eat whatever he wants. Luckily, the Pepto treatment is working 100% for me but that's only for 8 weeks!
@Camie....yes, go slowly off the Entocort and please, no more Gluten....it's poison to our bodies. I've actually had no problem going GF. My big problem is that I love vegges but eating a lot those can cause a problem so that can be frustrating.
@ Leah....I'm so dying for a big salad! I do hope yours was just going bad and that your body will be able to tolerate a fresh, big salad. I have learned a lot from you and can't thank you enough!
Good luck to us all!
Terri
@Camie....yes, go slowly off the Entocort and please, no more Gluten....it's poison to our bodies. I've actually had no problem going GF. My big problem is that I love vegges but eating a lot those can cause a problem so that can be frustrating.
@ Leah....I'm so dying for a big salad! I do hope yours was just going bad and that your body will be able to tolerate a fresh, big salad. I have learned a lot from you and can't thank you enough!
Good luck to us all!
Terri