Hi Gloria,
Thanks for the update - it's good to read that you haven't given up on the "entocort free" yet. I so appreciate your honesty and lack of sugar coating in your posts. Sharing the real truth about our individual struggles here is invaluable. I know just what you mean about feeling an urge to communicate only the good news to new people who come here for help, but I believe that it is just as important to share the tough news, because the reality is that this is a tough disease to combat. We are each responsible for our own approach, and learn from each other in so many ways.
Keep up the fight, and as usual, I look forward to sharing in your MC journey through your updates here.
Love,
Kari
Weaning Off Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Gloria, you know my heart bleeds for you! I am just catching up on posts (500+). I feel your pain. I have not been at it as long as you, but I am also back to square one and I am taking the max I can take of Entocort (2) plus 1/2 Imodium AM/PM. I just weighed in at 99#'s fully clothed at 5'5", so you know I understand the weight issue.
I finally got into a doc (with some help from friends; not taking any new patients prior) who is an alternative doc. I will PM you what I am doing now. Since I have just begun a new regiment, I do not want to post until I see results. We are hard cases and I believe it takes a variety of healing processes.
My friends tell me to not give up hope and keep trying, but unless you can see some consistency; it is hard to do!! Much love, G
I finally got into a doc (with some help from friends; not taking any new patients prior) who is an alternative doc. I will PM you what I am doing now. Since I have just begun a new regiment, I do not want to post until I see results. We are hard cases and I believe it takes a variety of healing processes.
My friends tell me to not give up hope and keep trying, but unless you can see some consistency; it is hard to do!! Much love, G
God, grant me the serenity to accept the things I cannot change; courage to change those things I can, and WISDOM to know the difference
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mzh
- Rockhopper Penguin
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Hi Gloria,
I feel for you. I've been on Entocort since 2005. So much for staying on it for three months as the drug sheets say; just can't do it! I also tried to wean off Entocort starting Feb 2010. I kept diaries and kept trying to find a reason "why?" but was unable to figure out a cause nor to get off it longer than 56 days. (I was gluten-free at the time and it seemed to help initially.) When I restarted it I got back down to one pill every 2 days. That worked for quite some time but I just had a flare up to beat the band. I also had very low body temps with soft to runny poops for a year. One pill every 2 or 3 days was a waste but it was a good experiment.
When I restarted 6 mg Entocort last week, the D began to stop quickly. Lo and behold, my body temp quit being between 95.5 and 97 (94.3 at it's lowest when I was sickest) and went up to 98.4! I've also been drinking a lot of Sam's bottled water, the kind with the minerals added. It stops legs cramps too. I hope this higher dose keeps my too low Vitamin D higher. We'll see in Nov.
So, I don't know how to get off this either. I haven't done any lab testing yet (Enterolab and such) and now I'm wondering if I should just skip it.
Pred works too and I feel fantastic on it. If only it were safe to take long term.... I have to wonder if some of us just *need* a corticosteroid for some obscure reason.
Let's persevere despite our setbacks though!
I feel for you. I've been on Entocort since 2005. So much for staying on it for three months as the drug sheets say; just can't do it! I also tried to wean off Entocort starting Feb 2010. I kept diaries and kept trying to find a reason "why?" but was unable to figure out a cause nor to get off it longer than 56 days. (I was gluten-free at the time and it seemed to help initially.) When I restarted it I got back down to one pill every 2 days. That worked for quite some time but I just had a flare up to beat the band. I also had very low body temps with soft to runny poops for a year. One pill every 2 or 3 days was a waste but it was a good experiment.
When I restarted 6 mg Entocort last week, the D began to stop quickly. Lo and behold, my body temp quit being between 95.5 and 97 (94.3 at it's lowest when I was sickest) and went up to 98.4! I've also been drinking a lot of Sam's bottled water, the kind with the minerals added. It stops legs cramps too. I hope this higher dose keeps my too low Vitamin D higher. We'll see in Nov.
So, I don't know how to get off this either. I haven't done any lab testing yet (Enterolab and such) and now I'm wondering if I should just skip it.
Pred works too and I feel fantastic on it. If only it were safe to take long term.... I have to wonder if some of us just *need* a corticosteroid for some obscure reason.
Let's persevere despite our setbacks though!
Well, this is difficult to write, but I went back on Entocort today with the resignation that I'll probably have to stay on it.
I had a temporary improvement after stopping the statin, but within two days, I was back to D. I posted elsewhere that I experimented with giving up all vegetables for a couple of days, and I began having improved BMs. It's hard to know if giving up all vegetables would give me remission; generally my improvements are short-lived.
When I resumed eating vegetables, I ate some Brussels sprouts I found in my garden as a replacement for broccoli. I had explosive D the next day and continue to have watery D. My weight has dropped to 99 lbs.
I became curious about the fructose content of the vegetables I was eating: broccoli, Brussels sprouts, cauliflower, and asparagus. I was surprised to find that they all contain higher levels of fructose than avocado, the only fruit I can tolerate. Vegetables with low levels of fructose include peas, sauerkraut, spinach, artichokes, mushrooms, Rapini, beets, and corn. Of those, I can eat corn; I haven't tried Rapini or artichokes. I'm guessing that my problem with vegetables is the fructose. It would explain why Pat and I, the two people on the board with fructose intolerance, are having such a difficult time achieving remission without drugs.
When I realized that I would have to give up all fruits and vegetables in addition to being GF, EF, DF, SF, YF, among my other intolerances, I knew that I didn't have much choice in going back on Entocort.
I still plan on following a strict diet, but I am hoping I can indulge in half a banana or rhubarb in muffins once in a while. I will probably resume taking Simvistatin shortly.
Once again, I don't want to discourage others. I seem to have a rather insurmountable list of intolerances: fructose, histamines, and the five Enterolab intolerances. Most here are not intolerant to fructose or histamines and should be able to beat this beast. I am always happy for those who can. It's quite an accomplishment and you should feel proud. My feelings are more resignation than defeat. I know that I've given diet my all; I hope I can get back to normal with Entocort fairly quickly and will only need a small amount to maintain.
Gloria
I had a temporary improvement after stopping the statin, but within two days, I was back to D. I posted elsewhere that I experimented with giving up all vegetables for a couple of days, and I began having improved BMs. It's hard to know if giving up all vegetables would give me remission; generally my improvements are short-lived.
When I resumed eating vegetables, I ate some Brussels sprouts I found in my garden as a replacement for broccoli. I had explosive D the next day and continue to have watery D. My weight has dropped to 99 lbs.
I became curious about the fructose content of the vegetables I was eating: broccoli, Brussels sprouts, cauliflower, and asparagus. I was surprised to find that they all contain higher levels of fructose than avocado, the only fruit I can tolerate. Vegetables with low levels of fructose include peas, sauerkraut, spinach, artichokes, mushrooms, Rapini, beets, and corn. Of those, I can eat corn; I haven't tried Rapini or artichokes. I'm guessing that my problem with vegetables is the fructose. It would explain why Pat and I, the two people on the board with fructose intolerance, are having such a difficult time achieving remission without drugs.
When I realized that I would have to give up all fruits and vegetables in addition to being GF, EF, DF, SF, YF, among my other intolerances, I knew that I didn't have much choice in going back on Entocort.
I still plan on following a strict diet, but I am hoping I can indulge in half a banana or rhubarb in muffins once in a while. I will probably resume taking Simvistatin shortly.
Once again, I don't want to discourage others. I seem to have a rather insurmountable list of intolerances: fructose, histamines, and the five Enterolab intolerances. Most here are not intolerant to fructose or histamines and should be able to beat this beast. I am always happy for those who can. It's quite an accomplishment and you should feel proud. My feelings are more resignation than defeat. I know that I've given diet my all; I hope I can get back to normal with Entocort fairly quickly and will only need a small amount to maintain.
Gloria
You never know what you can do until you have to do it.
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mzh
- Rockhopper Penguin
- Posts: 615
- Joined: Fri Nov 12, 2010 8:03 pm
- Location: Upstate South Carolina
- Contact:
Welcome to the club, Gloria. I've been on Entocort since 2005 and expect to be on it forever at the rate I'm going. You've clearly tried everything to stop it - far more than I have. Your weight loss is terrible. I am the opposite of you in that regard; I gain weight b/c the food that doesn't shoot through me now gets absorbed as calories. I hope you'll gain some weight if you stay on it.
Gloria,
I know this is not the outcome that you were hoping for, but I truly admire you for this thoroughly researched and well-thought out decision. I hope you are soon restabilized for symptoms, and able to use the magic of Entocort to add foods to your diet - not only for nutrition and restoring a few pounds, but also for variety and enjoyment.
I hope you will wait on adding back the Simvastatin. I think one big change at a time is plenty, even for 'civilians' without MC, and I have a lot of concerns about that class of drugs, and their risks/benefits... But I know your decision process to be absolutely top-notch, and am behind you in this as well.
Thank you for sharing your thinking, and your whole process. It's of vital benefit to many of us who are still picking our way through the underbrush on this road.
All my best, always,
Sara
I know this is not the outcome that you were hoping for, but I truly admire you for this thoroughly researched and well-thought out decision. I hope you are soon restabilized for symptoms, and able to use the magic of Entocort to add foods to your diet - not only for nutrition and restoring a few pounds, but also for variety and enjoyment.
I hope you will wait on adding back the Simvastatin. I think one big change at a time is plenty, even for 'civilians' without MC, and I have a lot of concerns about that class of drugs, and their risks/benefits... But I know your decision process to be absolutely top-notch, and am behind you in this as well.
Thank you for sharing your thinking, and your whole process. It's of vital benefit to many of us who are still picking our way through the underbrush on this road.
All my best, always,
Sara
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MaggieRedwings
- King Penguin
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Morning Gloria,
Well your situation really sucks! Going back to Entocort for you may be the best way to manage adding a few things back into your meager list of foods and hopefully you will be able to gain some pounds back. Years ago, one would never have wanted to gain weight back but this disease can really make you shed them. I so want to see you be able to eat a more varied diet and feel better than you do.
Love, Maggie
Well your situation really sucks! Going back to Entocort for you may be the best way to manage adding a few things back into your meager list of foods and hopefully you will be able to gain some pounds back. Years ago, one would never have wanted to gain weight back but this disease can really make you shed them. I so want to see you be able to eat a more varied diet and feel better than you do.
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!
.I appreciate all of your comments and kind words. It looks like it's going to take some time for Entocort to "kick in" again. It took three months the last time I increased the dosage, after I eliminated some foods. Within weeks, I had problems again and had to eliminate more foods. Finally, after six months, I began seeing Normans. I'm not in a position to eliminate any more foods this time, so I'm hoping that Entocort will still be effective.
Gloria
No, I've never considered that I have low stomach acid because I don't have GERD. I suppose it's possible because I can't eat anything acidic like vinegar and citric acid. I get mouth sores soon afterward. Is there a reason you use Betaine HCI with pepsin instead of vinegar or citric acid?mzh wrote:have you ever considered that you might have low stomach acid? Maybe that's a partial reason you can't digest much.
Gloria
You never know what you can do until you have to do it.
If I recall correctly, Betaine HCl is sort of the opposite of a PPI. Where a PPI suppresses the ability of the parietal cells in the stomach to produce hydrochloric acid, Betaine HCl stimulates them to produce more acid.
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.
So using Betaine HCI would stimulate the parietal cells to produce hydrochloric acid instead of putting an exterior acid into my stomach. Maybe I should try it and see if things improve. I must not have much acid considering I don't eat any acidic foods at all.Tex wrote:Where a PPI suppresses the ability of the parietal cells in the stomach to produce hydrochloric acid, Betaine HCl stimulates them to produce more acid.
Gloria
You never know what you can do until you have to do it.
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mzh
- Rockhopper Penguin
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Gloria, I do use ACV and olive oil in my salads even though I'm not a fan of the vinegar; it always bothers my throat some. I don't get sores like you do though.
Tex is right; the Bet HCl is the opposite of PPIs. I was on omeprazole for a few months b/c my GI doc said so but couldn't tolerate it more than 4 weeks at a time; it always made my mic colitis flare up. My GI doc told me to take three Entocorts instead of two to control the diarrhea. That didn't agree with me either so I stopped the PPI. He knows. He also told me I sometimes see pills in the toilet b/c I have a somewhat shortened colon. That's not right either, right Tex?
He also told me one Bet HCl was meaningless b/c there's already tons of acid in the stomach. I asked him to check the actual amount in my stomach when he did the endoscopy but he ignored me. Instead, he told me I had focal Barrett's, which is why I was supposed to be on PPIs for TWO YEARS! No way will I do that. Like you, I don't ever feel GERD.
Do a search on "testing for low stomach acid" or on hypochlorhydria. You will see that most of the mainstream doctors don't address this at all. FWIW, I take Solgor Betaine HCl with Pepsin. It's a powder in a gel cap rather than a hard pill.
Your mouth sores and weight loss worry me though. However, too much alkalinity could be contributing to your problems as much as too much acid.
Tex is right; the Bet HCl is the opposite of PPIs. I was on omeprazole for a few months b/c my GI doc said so but couldn't tolerate it more than 4 weeks at a time; it always made my mic colitis flare up. My GI doc told me to take three Entocorts instead of two to control the diarrhea. That didn't agree with me either so I stopped the PPI. He knows. He also told me I sometimes see pills in the toilet b/c I have a somewhat shortened colon. That's not right either, right Tex?
He also told me one Bet HCl was meaningless b/c there's already tons of acid in the stomach. I asked him to check the actual amount in my stomach when he did the endoscopy but he ignored me. Instead, he told me I had focal Barrett's, which is why I was supposed to be on PPIs for TWO YEARS! No way will I do that. Like you, I don't ever feel GERD.
Do a search on "testing for low stomach acid" or on hypochlorhydria. You will see that most of the mainstream doctors don't address this at all. FWIW, I take Solgor Betaine HCl with Pepsin. It's a powder in a gel cap rather than a hard pill.
Your mouth sores and weight loss worry me though. However, too much alkalinity could be contributing to your problems as much as too much acid.
Gloria,
It really shouldn't matter whether you eat acidic foods or not, your stomach should automatically produce enough hydrochloric acid to maintain a pH in the range of 1.5 to 3.5, for proper digestion. Most of us lose some of our capacity to produce stomach acid as we age, but for some strange reason, doctors tend to automatically assume that everyone produces too much acid.
I have a hunch that the strange reason has a lot to do with pharmaceutical company promotions of PPIs. 
That said, very few people take Betaine HCl to supplement their stomach acid production. I suspect that situation would be quite different if drug companies were promoting Betaine HCl, instead of PPIs. That will never happen, though, since Betaine HCl is a cheap, OTC product. Without actually measuring stomach acidity, it's pretty much of a guessing game, unfortunately.
I tried it, when I was recovering. I was kind of surprised that I "had the guts" to do it, because this was after the enzyme fiasco that had made me so sick. Anyway, I tried a pill at the start of each meal, for a while, when my digestion didn't seem to be doing so well, and it seemed to help. I don't remember if I ever tried to increase the dose, but I didn't use it very long, anyway, because about half the time I would forget to take it, and I seemed to do OK without it, so I stopped using it.
Tex
It really shouldn't matter whether you eat acidic foods or not, your stomach should automatically produce enough hydrochloric acid to maintain a pH in the range of 1.5 to 3.5, for proper digestion. Most of us lose some of our capacity to produce stomach acid as we age, but for some strange reason, doctors tend to automatically assume that everyone produces too much acid.
I have a hunch that the strange reason has a lot to do with pharmaceutical company promotions of PPIs. That said, very few people take Betaine HCl to supplement their stomach acid production. I suspect that situation would be quite different if drug companies were promoting Betaine HCl, instead of PPIs. That will never happen, though, since Betaine HCl is a cheap, OTC product. Without actually measuring stomach acidity, it's pretty much of a guessing game, unfortunately.
I tried it, when I was recovering. I was kind of surprised that I "had the guts" to do it, because this was after the enzyme fiasco that had made me so sick.
Anyway, I tried a pill at the start of each meal, for a while, when my digestion didn't seem to be doing so well, and it seemed to help. I don't remember if I ever tried to increase the dose, but I didn't use it very long, anyway, because about half the time I would forget to take it, and I seemed to do OK without it, so I stopped using it.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.