Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
You won't develop a dependency on Entocort in 90 days. If you use it for a year or two, it's a different situation.
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.
Yes, but the original poster said she had only been on it for 3.5 months (roughly 105 days). And yes, I do realize everyone reacts differently. I'm really not trying to be argumentative.tex wrote:You won't develop a dependency on Entocort in 90 days. If you use it for a year or two, it's a different situation.
Tex
Age: 51
What doesn't kill you, just makes you stronger.
What doesn't kill you, just makes you stronger.
Weaning from foods is not something I am familiar with. While I was officially diagnosed with LC a year ago, I know I've been battling it since around 1993. I have taken so much imodium in the past 15 years popping ten at a time doesn't make me bat an eye. I guess I'm pretty lucky. So far the LC hasn't caused me any weight lose, no aches or pains in my joints, no fever, no cramps or bloating, just extreme LC. The best it has been controlled was when I was taking Apriso 3/day and Entocort EC 3/day supplementing that with amodium tablets (perhaps 10-12/week) at the first sign of D. Which is a heck of a lot better than my imodium intake before I was diagnosed (20-25/day).
So If I can find another drug or drugs that work as well as the Apriso/Entocort combo I will be happy only taking 12 imodium tablets a week. The gluten diet will have to wait as a last resort. I am hoping I do well on the Asacol HD I just started on.
So If I can find another drug or drugs that work as well as the Apriso/Entocort combo I will be happy only taking 12 imodium tablets a week. The gluten diet will have to wait as a last resort. I am hoping I do well on the Asacol HD I just started on.
Age: 51
What doesn't kill you, just makes you stronger.
What doesn't kill you, just makes you stronger.
Tex is familiar with my long journey, which explains his post. I have been on and off Entocort for the past four years. The last time I was off of it completely was in the fall of 2008, and I relapsed within 6 weeks of getting off it. This is the first time since 2008 that I've "weaned" off of it, meaning I had been taking it continuously for two years before trying to get off of it again. I've relapsed each time I've gone off of it, so this time I've been very careful to gauge my reactions and eliminate more foods in the process.Skunk Ape wrote:the original poster said she had only been on it for 3.5 months (roughly 105 days).
Gloria
You never know what you can do until you have to do it.
Hi all,
I've been waiting to post until I've stabilized, but it appears that time isn't going to arrive. I need a little support right now, so my post is both for you and for me.
I stopped taking Entocort 16 weeks ago. Within a week, Norman stopped being perfect and began to deteriorate somewhat, though I wasn't concerned. I have always treated problems by looking for possible food intolerances and eliminating them. Right away I eliminated ghee, then the margarine replacement I subsequently used. Brussel sprouts became difficult to eat without ghee, so I switched to broccoli. I've also eliminated all nut butter, coconut milk, and finally rice.
My diet is extremely limited now and I've lost a couple of pounds since eliminating rice. I tried making bread without rice yesterday using quinoa and almond flour, and it flopped. A turkey sandwich was the only meal I could eat away from home.
A couple of events in the past week have made me realize that I can't continue to eat this limited of a diet any longer. Last week DD#1 called in the morning and invited me to the county fair. She said she'd be over in about an hour. My first reaction was panic. What would I eat for lunch? I had to quickly make salad dressing for my turkey sandwich and I realized that I didn't have any rice-free bread. I packed the sandwich with rice bread and went. And paid the price with D.
I'll be flying to Utah on Friday to babysit for DD#2 while she attends inservice meetings next week. She mentioned that we could go to the water park after I arrive at 10 a.m. Again, my first reaction was to panic about my meals. While she was talking about the park, I was quickly determining how I could eat two meals at a water park. I've decided that I can eat Boar's Head sliced turkey wrapped in tortillas for dinner. I'll insist on having soup at her house before we go. She'll have to buy asparagus and Imagine's no-chicken broth before I arrive.
I've been willing to dramatically limit my food options in order to heal, but that apparently hasn't happened. I'm obviously still eating foods that are bothering me. I could eat nothing but my three meats and three vegetables (none of which are starchy or filling) to see if I improve.
I've been waiting to post until I've stabilized, but it appears that time isn't going to arrive. I need a little support right now, so my post is both for you and for me.
I stopped taking Entocort 16 weeks ago. Within a week, Norman stopped being perfect and began to deteriorate somewhat, though I wasn't concerned. I have always treated problems by looking for possible food intolerances and eliminating them. Right away I eliminated ghee, then the margarine replacement I subsequently used. Brussel sprouts became difficult to eat without ghee, so I switched to broccoli. I've also eliminated all nut butter, coconut milk, and finally rice.
My diet is extremely limited now and I've lost a couple of pounds since eliminating rice. I tried making bread without rice yesterday using quinoa and almond flour, and it flopped. A turkey sandwich was the only meal I could eat away from home.
A couple of events in the past week have made me realize that I can't continue to eat this limited of a diet any longer. Last week DD#1 called in the morning and invited me to the county fair. She said she'd be over in about an hour. My first reaction was panic. What would I eat for lunch? I had to quickly make salad dressing for my turkey sandwich and I realized that I didn't have any rice-free bread. I packed the sandwich with rice bread and went. And paid the price with D.
I'll be flying to Utah on Friday to babysit for DD#2 while she attends inservice meetings next week. She mentioned that we could go to the water park after I arrive at 10 a.m. Again, my first reaction was to panic about my meals. While she was talking about the park, I was quickly determining how I could eat two meals at a water park. I've decided that I can eat Boar's Head sliced turkey wrapped in tortillas for dinner. I'll insist on having soup at her house before we go. She'll have to buy asparagus and Imagine's no-chicken broth before I arrive.
I've been willing to dramatically limit my food options in order to heal, but that apparently hasn't happened. I'm obviously still eating foods that are bothering me. I could eat nothing but my three meats and three vegetables (none of which are starchy or filling) to see if I improve.
You never know what you can do until you have to do it.
Hi everyone,
I've been waiting to post a positive report on my progress, but it's time to wave the white flag.
I've been off Entocort for 18 weeks now, and I'm pretty much back to square one again. I am having D or almost D two to four times a day, sometimes with small accidents. My BMs are getting worse instead of better. I've taken 1/2 Imodium AD as needed, which has been several times a week. I tested yellow reactive on the MRT test (2.8) to Blue #1 food dye, an ingredient in Imodium AD. I don't know how much the dye affects me, so I'm reluctant to take larger doses regularly.
I can't help but wonder if I'll ever figure out all of my intolerances, or even if food is the only problem. Since I've stopped taking Entocort, I've given up additional foods: ghee, margarine, coconut, nut butters, Brussel sprouts, rice, and recently, quinoa. There isn't much left to eliminate. It seems that each time I give up a food, I have temporary improvement, but within a short time, I have to consider another food. I'm presently eating 9 different foods.
I am concerned that after being on this restricted diet for over a year, I am missing important nutrients. I was borderline low in potassium a few months ago and I'm unable to eat any fruits or vegetables which provide a high quantity of it. I haven't eaten fruit, other than occasional testing, in two years. I've been GF, EF, CF, and SF for four years.
I'm ready to throw in the towel with further food elimination. I don't think I'll have an adequate diet if I eliminate any more foods, both nutritionally and with calories. I'm considering going back on Entocort with the hope that I can expand my diet and have more predictability in my bathroom visits. I don't think I will try to wean off of it anymore unless I begin straining when I go. I'm hoping I can maintain on one pill per day and that I'll be able to order it overseas once DH retires in January.
I feel that I've given the diet my all, but it's just not enough. Fructose intolerance and the mast cell issue have complicated my situation. In addition, not being able to eat any root vegetables or squash have limited my calories and menu options.
I want to remind those new to the board that I am an unusual case. I believe that achieving remission through diet is possible and the preferred way. It's just not working for a situation as complicated as mine.
Gloria
I've been waiting to post a positive report on my progress, but it's time to wave the white flag.
I've been off Entocort for 18 weeks now, and I'm pretty much back to square one again. I am having D or almost D two to four times a day, sometimes with small accidents. My BMs are getting worse instead of better. I've taken 1/2 Imodium AD as needed, which has been several times a week. I tested yellow reactive on the MRT test (2.8) to Blue #1 food dye, an ingredient in Imodium AD. I don't know how much the dye affects me, so I'm reluctant to take larger doses regularly.
I can't help but wonder if I'll ever figure out all of my intolerances, or even if food is the only problem. Since I've stopped taking Entocort, I've given up additional foods: ghee, margarine, coconut, nut butters, Brussel sprouts, rice, and recently, quinoa. There isn't much left to eliminate. It seems that each time I give up a food, I have temporary improvement, but within a short time, I have to consider another food. I'm presently eating 9 different foods.
I am concerned that after being on this restricted diet for over a year, I am missing important nutrients. I was borderline low in potassium a few months ago and I'm unable to eat any fruits or vegetables which provide a high quantity of it. I haven't eaten fruit, other than occasional testing, in two years. I've been GF, EF, CF, and SF for four years.
I'm ready to throw in the towel with further food elimination. I don't think I'll have an adequate diet if I eliminate any more foods, both nutritionally and with calories. I'm considering going back on Entocort with the hope that I can expand my diet and have more predictability in my bathroom visits. I don't think I will try to wean off of it anymore unless I begin straining when I go. I'm hoping I can maintain on one pill per day and that I'll be able to order it overseas once DH retires in January.
I feel that I've given the diet my all, but it's just not enough. Fructose intolerance and the mast cell issue have complicated my situation. In addition, not being able to eat any root vegetables or squash have limited my calories and menu options.
I want to remind those new to the board that I am an unusual case. I believe that achieving remission through diet is possible and the preferred way. It's just not working for a situation as complicated as mine.
Gloria
You never know what you can do until you have to do it.
Gloria,
I'm sorry to hear that you've "lost" quinoa - and I did not realize that Imodium AD also contained a suspect ingredient for you. You're one of the best observational thinkers I know. I believe with all my heart that your conclusion about whether or not to resume Entocort will be as well thought out as is possible on this earth.
I'd also bet that you're right that the mast cells factor really undermines all the other work you've done, on diet. I don't know whether gastrocrom or quercetin or one of the H1 or H2 blockers would be useful, or how risky it would be to figure that out. I am experimenting with quercetin now, and taking 1/2 a Claritin daily. I believe it is helping, but I also think my observational skills aren't as keen as yours, and I am newer to this, for sure. I have only started down this path.
I thank you for your update, and wish the news were more joyful for you. I wonder whether discovering food intolerances at a younger/healthier state might help, though that's not so beneficial for you or for me. But maybe for others...
I do hope you're able to keep your 9 foods, and add something, and heal; I have a lot of faith in your wisdom in this process, which has truly been an inspiration for me.
Sending you my most heartful wishes for health, healing, and good nutrition,
Sara
I'm sorry to hear that you've "lost" quinoa - and I did not realize that Imodium AD also contained a suspect ingredient for you. You're one of the best observational thinkers I know. I believe with all my heart that your conclusion about whether or not to resume Entocort will be as well thought out as is possible on this earth.
I'd also bet that you're right that the mast cells factor really undermines all the other work you've done, on diet. I don't know whether gastrocrom or quercetin or one of the H1 or H2 blockers would be useful, or how risky it would be to figure that out. I am experimenting with quercetin now, and taking 1/2 a Claritin daily. I believe it is helping, but I also think my observational skills aren't as keen as yours, and I am newer to this, for sure. I have only started down this path.
I thank you for your update, and wish the news were more joyful for you. I wonder whether discovering food intolerances at a younger/healthier state might help, though that's not so beneficial for you or for me. But maybe for others...
I do hope you're able to keep your 9 foods, and add something, and heal; I have a lot of faith in your wisdom in this process, which has truly been an inspiration for me.
Sending you my most heartful wishes for health, healing, and good nutrition,
Sara
Gloria,
I don't know what else to say, except that you may well be right - you've certainly given it your all, and tried very hard to make it work, but obviously, there's still something triggering your symptoms.
Hopefully, on a minimal dose, you'll be able to expand your diet a bit.
I can understand how difficult it was for you to write that post - it's almost as if you are announcing the end of an era, (you started this thread almost 4 years ago). And it makes me kind of sad to think about the implications, but you're right - life goes on, and we have to do whatever is necessary, to control our symptoms.
Incidentally, have you noticed how popular this thread is? Almost 28,600 views - that's a lotta views.
Tex
I don't know what else to say, except that you may well be right - you've certainly given it your all, and tried very hard to make it work, but obviously, there's still something triggering your symptoms.
Hopefully, on a minimal dose, you'll be able to expand your diet a bit.I can understand how difficult it was for you to write that post - it's almost as if you are announcing the end of an era, (you started this thread almost 4 years ago). And it makes me kind of sad to think about the implications, but you're right - life goes on, and we have to do whatever is necessary, to control our symptoms.
Incidentally, have you noticed how popular this thread is? Almost 28,600 views - that's a lotta views.
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.
Dear Gloria,
How are you doing now? I'm keeping my fingers crossed that going back on entocort has enabled you to get a more varied diet again. I remember when you where doing so well and even managed a "flare free" trip to Hawaii. Your story reminds me of how individual we are with regards to this disease. We each have to find our own way. I keep thinking about Grannyh who finally experienced "spontaneous remission" and could get off entocort, and Maggie, who after 10 years of diet diligence, finally succeeded in reaching remission.
Are you taking any supplements? I have not found any that I seem to tolerate - including vitamin D, B's, probiotics, protein powders, etc. I try to be out in the sun a lot, so my D reading is within "normal". For the time being I do well with Imodium, which I frequently reach for when things get to "loose".
Anyhow, I've been thinking a lot about you and your struggles, and sincerely hope that being back on entocort will do the trick for now. As time goes by, and you continue to stick with a GF, DF, etc. diet, it would seem that your gut is bound to heal
. As usual, I look forward to following along on your MC journey.
Love and hugs,
Kari
How are you doing now? I'm keeping my fingers crossed that going back on entocort has enabled you to get a more varied diet again. I remember when you where doing so well and even managed a "flare free" trip to Hawaii. Your story reminds me of how individual we are with regards to this disease. We each have to find our own way. I keep thinking about Grannyh who finally experienced "spontaneous remission" and could get off entocort, and Maggie, who after 10 years of diet diligence, finally succeeded in reaching remission.
Are you taking any supplements? I have not found any that I seem to tolerate - including vitamin D, B's, probiotics, protein powders, etc. I try to be out in the sun a lot, so my D reading is within "normal". For the time being I do well with Imodium, which I frequently reach for when things get to "loose".
Anyhow, I've been thinking a lot about you and your struggles, and sincerely hope that being back on entocort will do the trick for now. As time goes by, and you continue to stick with a GF, DF, etc. diet, it would seem that your gut is bound to heal
. As usual, I look forward to following along on your MC journey.Love and hugs,
Kari
"My mouth waters whenever I pass a bakery shop and sniff the aroma of fresh bread, but I am also grateful simply to be alive and sniffing." Dr. Bernstein
Hi Kari,
Tex was right; it was pretty hard to write the post above. It's even harder to actually resume taking Entocort, and I haven't started yet.
When I was visiting my daughter a couple of weeks ago, a near-Norman suddenly appeared. I was excited, of course, and assumed that the rice elimination was finally having a positive effect. But then I began to deteriorate and after a few days, and I was back to square one. It dawned on me after I wrote my post that I had forgotten to take Simvastatin for a few days before the near-Norman appeared. After I resumed taking it, I began having problems again. When I realized that there might be a connection, I stopped taking it, and I'm having improved BMs again. Eliminating quinoa has also helped.
I'd gone off Simvastatin before without seeing any improvement, but I was eating other foods that I've since eliminated. It's too soon to know if this will cause a remission of my MC, but I have a little more hope. I'm going to give it a couple of weeks. My immune system seems to always want something to battle, and it's just been a matter of time before another intolerance pops up.
My diet is very similar to what it's been this past year, but I no longer eat rice cereal, creamed quinoa, or rice with dinner. I tried making bread without rice, and it flopped, so I'm not eating bread anymore. I've substituted corn tortillas or almond-corn tortillas for bread when I'm away from home, and I eat a muffin instead of rice cereal for breakfast and rice at dinner. I also substitute a muffin for the creamed quinoa. I've lost a couple of pounds and am hoping I won't lose any more. I have learned how to make muffins with almond flour, cornstarch and arrowroot.
I need to enter my foods into a nutritional database to see if I'm getting sufficient nutrients. I tried eating a low-acid tomato from my garden last week with Histame and Zyrtec, but I still had a strong reaction. I have over a dozen itchy head bumps due to being outside without a hat for a half hour. They are clearing up, thank goodness.
I will keep you posted.
Gloria
Tex was right; it was pretty hard to write the post above. It's even harder to actually resume taking Entocort, and I haven't started yet.
When I was visiting my daughter a couple of weeks ago, a near-Norman suddenly appeared. I was excited, of course, and assumed that the rice elimination was finally having a positive effect. But then I began to deteriorate and after a few days, and I was back to square one. It dawned on me after I wrote my post that I had forgotten to take Simvastatin for a few days before the near-Norman appeared. After I resumed taking it, I began having problems again. When I realized that there might be a connection, I stopped taking it, and I'm having improved BMs again. Eliminating quinoa has also helped.
I'd gone off Simvastatin before without seeing any improvement, but I was eating other foods that I've since eliminated. It's too soon to know if this will cause a remission of my MC, but I have a little more hope. I'm going to give it a couple of weeks. My immune system seems to always want something to battle, and it's just been a matter of time before another intolerance pops up.
My diet is very similar to what it's been this past year, but I no longer eat rice cereal, creamed quinoa, or rice with dinner. I tried making bread without rice, and it flopped, so I'm not eating bread anymore. I've substituted corn tortillas or almond-corn tortillas for bread when I'm away from home, and I eat a muffin instead of rice cereal for breakfast and rice at dinner. I also substitute a muffin for the creamed quinoa. I've lost a couple of pounds and am hoping I won't lose any more. I have learned how to make muffins with almond flour, cornstarch and arrowroot.
I need to enter my foods into a nutritional database to see if I'm getting sufficient nutrients. I tried eating a low-acid tomato from my garden last week with Histame and Zyrtec, but I still had a strong reaction. I have over a dozen itchy head bumps due to being outside without a hat for a half hour. They are clearing up, thank goodness.
Yes, I'm aware that there are many views of this thread. I know that a lot of people are watching my progress. I feel a responsibility to be honest, and to give them hope. I have hope at the moment, and want those reading this to also have it.Tex wrote:Incidentally, have you noticed how popular this thread is? Almost 28,600 views - that's a lotta views.
I will keep you posted.
Gloria
You never know what you can do until you have to do it.
Gloria,
I knew that statins were listed as a trigger for MC, but I believe that you're the first person I'm actually aware of who has been able to confirm it, by personal experience. That observation was outstanding detective work. If you're already seeing improvement, that's very, very encouraging.
If this was the final all-important piece of the puzzle, and you continue to improve, I'll bet that after a while, you'll be able to add some foods back into your diet. Your latest post has made my week.
Thanks for the update.
Tex
I knew that statins were listed as a trigger for MC, but I believe that you're the first person I'm actually aware of who has been able to confirm it, by personal experience. That observation was outstanding detective work. If you're already seeing improvement, that's very, very encouraging.
If this was the final all-important piece of the puzzle, and you continue to improve, I'll bet that after a while, you'll be able to add some foods back into your diet. Your latest post has made my week.
Thanks for the update.
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.
Gloria,
Me too - your last post with a little cautious optimism made my week too. Am here in the peanut gallery cheering for you and keeping all fingers and toes crossed. As a fellow double DQ1, I emphasize totally with your trials and tribulations.
I have one thought, which you may have already considered or done: a trial of prednisone, followed by maintenance with Entocort and then tapering. I know this has worked for some of our members in the past. The prednisone serves to "jolt" the MC into submission. And you seem to tolerate steroids very well. Perhaps you are one who rapidly metabolizes certain drugs like steroids and therefore need a higher dose. (I see this sometimes in kiddies - where they might need a much greater dose of medication than usual). Just a thought.
Hugs,
Polly
Me too - your last post with a little cautious optimism made my week too. Am here in the peanut gallery cheering for you and keeping all fingers and toes crossed.
As a fellow double DQ1, I emphasize totally with your trials and tribulations. I have one thought, which you may have already considered or done: a trial of prednisone, followed by maintenance with Entocort and then tapering. I know this has worked for some of our members in the past. The prednisone serves to "jolt" the MC into submission. And you seem to tolerate steroids very well. Perhaps you are one who rapidly metabolizes certain drugs like steroids and therefore need a higher dose. (I see this sometimes in kiddies - where they might need a much greater dose of medication than usual). Just a thought.
Hugs,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.