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Weaning Off Entocort
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4754
User's local time:
2017 Sep 24 - 2:46 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Fri Sep 09, 2011 10:53 am    Post subject: Reply with quote

Marcia,

I appreciate that you are concerned about me and offering some suggestions. We seem to share the same problem - can't successfully stay off of Entocort. Nonetheless, I'm grateful that it eventually works for me. I hope it will again this time. Sometimes I think I should have never tried to get off of it. Each time I've tried, I've had to eliminate more foods to get Normans back. When I first began, I was eating many times more food than I am now. This time I don't have enough foods left to eliminate and still get enough calories and nutrition.

I've had mouth sores when I've had Normans regularly. I have greatly minimized their frequency by eliminating fruit and vinegar. I'm pretty sure that they are related to a mast cell reaction because vinegar is high in histamines.

Marcia wrote:
Gloria, I have to wonder if the mouth sores are from vitamin deficiencies b/c of the diarrhea. I'm thinking the Bs.


My supplement includes the B complex vitamins. I had my B12 level checked last year and it was 586, within the acceptable range of 211-946.

I test fine on all the standard blood tests, except for potassium, which is either borderline or low. In April, it was 3.5 out of an acceptable range of 3.5-5.2, and last year it was 3.3. I'm hoping that my potassium supplement is making up the shortage I have in my diet on some days.

Tex,
Thank you for your opinion about the Betaine HCl. I think I'll wait a bit before I try anything new. I need to give Entocort a chance to work. I've upped my dosage to 3 pills per day to see if it will kick in.

Gloria
_________________
You never know what you can do until you have to do it.
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30485
User's local time:
2017 Sep 24 - 2:46 AM


Food Intolerances : Gluten, casein, soy, and avenin, (avenin is the prolamin in oats, which is equivalent to the gluten in wheat), beef, grapes, peanuts, cashews, almonds, (but nut butters seem OK except for peanuts), citric acid, chocolate, and agar.
Location: Central Texas

PostPosted: Fri Sep 09, 2011 3:39 pm    Post subject: Reply with quote

Gloria,

FWIW, I believe you are making the right choice, at least that's what I would do, if I were in your shoes.

Good luck with this.

Tex
_________________
cowboy

It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Sep 24 - 3:46 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Fri Sep 09, 2011 3:45 pm    Post subject: Reply with quote

I would also do the Entocort thing first, given all you've been through. The Bet HCl was something to consider for your arsenal, that's all.
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Ginny
Gentoo Penguin
Gentoo Penguin
Canada

Joined: 12 Nov 2009

Posts: 278
User's local time:
2017 Sep 24 - 2:46 AM


Food Intolerances : gluten, dairy, eggs, soy, yeast, corn, all nightshades, tapioca, chicken, beef, no fruits except bananas and applesauce, pork, coconut
Location: Willis, Texas

PostPosted: Sat Sep 10, 2011 8:03 am    Post subject: Reply with quote

Gloria, you know how I feel for you and about you, but I also think you have made the right decision. You were successful even on a low dosage AND (important to you and me) you gained weight! As I have said, I think quality of life is most important. FWIW, I sent in for my 90 day supply and am suppose to get generic this time at the cost of only $20.

I am so proud of your persistence to keep trying to find the solution! You are my hero. I know you get down, but you pick yourself up and keep moving forward. You are so important to this board for your positive attitude and your inspirational path to wellness! 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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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4754
User's local time:
2017 Sep 24 - 2:46 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Tue Sep 13, 2011 10:21 am    Post subject: Reply with quote

Ginny,

You're so kind and understanding. I don't really see myself as anyone's hero - I'm just plugging along, trying the best I can to beat this monster like everyone else here.

I'm glad you're getting the generic form of Entocort for $20. My last refill cost just $10 due to the generic version. DH has bumped up his retirement date from January to April so that I can order one more refill under his insurance. I didn't even ask him to do it.

I'm getting the D under control after two weeks on Entocort. I had to increase Entocort to 3 pills per day and also take 1/2 - 1 Imodium a day. I'm happy that the protocol is working. I suspect the Imodium is doing most of the work right now.

Gloria
_________________
You never know what you can do until you have to do it.
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Sheila
Rockhopper Penguin
Rockhopper Penguin


Joined: 18 May 2011

Posts: 1127
User's local time:
2017 Sep 24 - 3:46 AM


Food Intolerances : gluten, eggs, cow's milk, soy, guar gum, whey, goat's milk, cocoa, crab, carrot, amaranth, kamut,
Location: Palm Beach Gardens, Fl

PostPosted: Sat Sep 17, 2011 11:22 am    Post subject: Reply with quote

Gloria, I have followed your ordeal trying to get off entocort, your severely restricted diet with awe. You have tremendous will power and persistence. I was especially interested in your effort to get off entocort. When I was diagnosed with celiac (through Entero lab genetic tests) my GI immediately told me he would try to wean me off entocort in 3 months. This was about 6 weeks ago. I have only been taking it for a few months. I am taking one a day because more than that causes severe constipation. He seems to have forgotten that I have CC. I still go 3-5 times in the a.m., all normans but have no other symptoms. I feel a lot better than I did and will not go back to the big D ever again, if possible.

I'm sorry you have had such a difficult time but you are an inspiration, for sure. I have not been on the site for a while since my DH retired 2 1/2 weeks ago. Life is not the same. Laughing crying
Sheila
_________________
To get something you never had, you have to do something you never did.

A person who never made a mistake never tried something new. Einstein
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mzh
Rockhopper Penguin
Rockhopper Penguin
United States

Joined: 12 Nov 2010

Posts: 615
User's local time:
2017 Sep 24 - 3:46 AM


Food Intolerances : gluten sensitivity
Location: Upstate South Carolina

PostPosted: Sat Sep 17, 2011 12:29 pm    Post subject: Reply with quote

Hi Gloria,

I've been having a hard time weaning off it from Jan to August but when a flare got so bad mid-August, I also had to go back to the 9 mg. (6 mg wasn't working.) It's been 8 days and it's getting a bit better. It looks like you and I and many of us are going to have to take Entocort to some extent until the medical researchers figure out a way for us to use something else -- or even better, until they find a reason and a cure for this vexing condition. I've been on it since 2007 b/c nothing I took from 2002 on was working.

My GP prescribed Bentyl (dicyclomine) for me yesterday. It's an antispasmodic meant for IBS, to be taken before meals in hopes of stopping urgent spasms right after eating. Have you or anyone else tried it? I'll start a thread on this if no one else has. I didn't take it yet b/c today has been good, knock on wood.
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4754
User's local time:
2017 Sep 24 - 2:46 AM


Food Intolerances : gluten, soy, casien, eggs, legumes, Pepto Bismol, all fruit (incl. tomatoes), all root vegetables, onions, peppers, carrageenan, chicken, beef, orange roughy, cucumber, vinegar, all squash, chocolate, olives, buckwheat, millet, tapioca, sorghum, rice
Location: Illinois

PostPosted: Sat Sep 17, 2011 9:31 pm    Post subject: Reply with quote

Sheila wrote:
my DH retired 2 1/2 weeks ago. Life is not the same.

Ah, my concern also. DH bumped his retirement from January to April, so I could get one more 90-day supply of Entocort for $10. I'm really nervous about him retiring because he has no hobbies other than watching movies and reading fiction books. I'll go crazy if he watches movies all day.

Thank you for your kind comments. I always worry that this thread is discouraging and have often thought I should delete it. I hope there is some value in sharing the ups and downs of the process.

I hope you can get to the point where you don't go multiple times in the a.m. Does Imodium AD make you constipated, too?


Marcia,

Yep, I'm resigned to the idea that I'll never be able to get off Entocort. I'm beginning to wonder if I'll ever be able to expand my diet. I just read that Roger Ebert (the movie critic) can no longer eat, drink or talk due to his cancer surgery. I tell myself that I am more fortunate than he is and I was able to eat anything I wanted for 62 years.

I suspect that any drug developed to treat MC will be just as expensive as Entocort. We can always hope, though.

Gloria
_________________
You never know what you can do until you have to do it.
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Julie
Adélie Penguin
Adélie Penguin
unknown IP

Joined: 31 Aug 2012

Posts: 181
User's local time:
2017 Sep 24 - 8:46 AM


Food Intolerances : Gluten, dairy, eggs, soy, fruit, raw vegetables, fat
Location: Belgium

PostPosted: Mon Sep 10, 2012 7:03 am    Post subject: Reply with quote

Hi Gloria,

I've been diagnosed only a year ago. Neutral I had to take Entocort 9 mg a day for 3 weeks, then I had to go to 6 mg a day for 3 weeks and so on. I got a rash ion my face but other then that I was fine. Then, suddenly, I got these flares again and I got hospitalised. Sad

My doctor said I flared because the LC wasn't really gone when I stopped taking entocort.

The thing is, I can't really help you, I still have flares and I got a new medecine now because I'm sick almost every other week. I wish you the best and I hope you keep us posted. You give me hope, because you seem doing well. Very Happy

Grtz
Julie
_________________
It doesn't matter how many times you fall, but how many times you get up en go for it again. HOPE !!!!
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ant
Rockhopper Penguin
Rockhopper Penguin


Joined: 28 Jun 2009

Posts: 1676
User's local time:
2017 Sep 24 - 4:46 PM


Food Intolerances : Gluten, Diary, Soy, Corn, Eggs, Peanuts and other legumes, nightshades (e.g. tomatoes and potatoes). DX Osteopenia. Suspect Celiac - Genes Type: DQ2/DQ8

PostPosted: Mon Sep 10, 2012 9:28 am    Post subject: Reply with quote

Dear Julie,

Quote:
My doctor said I flared because the LC wasn't really gone when I stopped taking entocort.


Research shows that most people with MC will relapse after coming off entocort unless they have removed their food intolerances. Entocort just treats but does not "cure" MC. Are you on a gluten free diet?

Wishing you progress on your journey to reaching remission, ant
_________________
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"Softly, softly catchee monkey".....
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swerdna

United States

Joined: 16 Jan 2015

Posts: 3
User's local time:
2017 Sep 24 - 2:46 AM




PostPosted: Sat Feb 21, 2015 7:17 pm    Post subject: Reply with quote

My experience with Entocort is as follows...I was diagnosed with MC--specifically collagenous colitis--in April 2014 and was put on Entocort. This was after a sudden onset of watery diarrhea that went on for over 6 months and after numerous tests and procedures including hospitalization that ruled out pretty much anything else but MC/CC after biopsies. I don't have any dietary restrictions and diet doesn't seem to impact my symptoms at all...although I have not tried a real serious elimination diet.

I did the 3 capsules of Entocort per day and slowly tapered down to 1 per day over the course of several months and once I was done I then tried to go without any at all and that lasted about a week. I went back on and was eventually able to control my symptoms with 1 Entocort and 1 imodium every other day.

Last December I was feeling really good so I decided to try stopping both the Entocort and imodium and went for a glorious 4 weeks without any symptoms and then without warning things returned.

So back on the Entocort I went.

My GI doctor at first seemed okay with me staying on a low dose of Entocort long term but then started suggesting I might need to try other medications...I really didn't want to be on any medications and felt like the Entocort was making me slowly gain weight or hang onto weight.

So I decided to try something that had always helped regulate my bathroom habits in the past...so..anyway...currently for breakfast every morning I am having a serving of Dannon Light & Fit Greek yogurt with half a serving of Kellogg's bran buds mixed in and I also take 1 imodium and 2 generic fiber tablets...and, I do not have any symptoms and have somewhat normal BM's each morning.

I am not taking Entocort at all anymore and things have stayed okay for over a month with my yogurt/bran buds.

I am not sure but the Bran Buds seem to help keep things firmed up and the imodium seems to keep things calmed down.

All I know is I don't have to take Entocort and feel the best I have in a long, long time. It feels really good to not be taking prescription medication as well.
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