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How long can you stay on Entocort?

 
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amyloren

United States

Joined: 17 Apr 2017
Posts: 1
User's local time:
2017 Dec 17 - 5:32 PM


Food Intolerances : soy, lactose intolerance, corn, many many more

PostPosted: Wed Dec 06, 2017 1:28 pm    Post subject: How long can you stay on Entocort? Reply with quote

I was diagnosed a year ago with MC, and started treatment with six capsules of budesonide a day. I was doing quite well, and saw the GI in the spring, who said if I can, to try and taper off. Because my summer is always extra stressful with my work, I tried a couple of times to reduce it, but still had problems. More so, in the fall, that after I would have a BM, I would have terrible cramping and pain for most of the day. No diarrhea. Anyway, went to another GI dr to get a second opinion, she was aghast that I had been on the budesonide so long, and had me start tapering right away. I had been following a gluten-free and dairy free diet and had been doing fairly well as long as I did not eat any of the trigger foods. Now, I am completely off of the budesonide, but have recently had a severe relapse. I am still trying to deal with the cramping, which becomes severe. Help! Do I have to go back to the original GI to see if I should taking the budesonide again, or can I just start myself?

I am not that thrilled with the new GI doctor anyway, as she wants to do some really expensive tests in my upper GI, that's not where the pain or the problem is.

I guess my real question is, how long can you stay on the budesonide?

Thanks!
Amy
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Amy Lorenzen
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tex
Site Admin
Site Admin


Joined: 24 May 2005

Posts: 30861
User's local time:
2017 Dec 17 - 5:32 PM


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: Wed Dec 06, 2017 3:34 pm    Post subject: Reply with quote

Hi Amy,

Welcome to the forum. Despite what most gastroenterologists claim, according to published research, you can probably safely stay on it pretty much indefinitely. Check this research article:

Quote:
Conclusions

Budesonide at a mean dose of 4.5 mg/day maintained clinical remission for at least 1 year in the majority of patients with collagenous colitis and preserved health-related quality of life without safety concerns. Treatment extension with low-dose budesonide beyond 1 year may be beneficial given the high relapse rate after budesonide discontinuation.


Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trial

We have a few members who, despite a restrictive diet, are unable to stay in remission without a reduced dose (maintenance dose) of budesonide. Some of them have used budesonide continuously for at least 5 or 6 years now, without any significant signs of side effects or other adverse results. Bone density tests usually indicate no significant changes.

Again, welcome to the forum, and please feel free to ask anything.

Tex
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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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Gabes-Apg
Emperor Penguin
Emperor Penguin


Joined: 21 Dec 2009

Posts: 7276
User's local time:
2017 Dec 18 - 9:32 AM


Food Intolerances : Gluten, Yeast, Caesin, Soy, salad/raw veges and fruit
Location: Hunter Valley NSW Australia

PostPosted: Wed Dec 06, 2017 3:59 pm    Post subject: Reply with quote

Welcome (and sympathies that you had to find us)

further to Tex's reply above, what we have seen over the years here that medications have a limited scope of success in calming the inflammation if;
- person is deficient in Vit D3 and magnesium and/or
- they consume/have contact with too many inflammatory triggers

you mention doing GF and DF - and seeing improvement, but maybe this was not enough if you were still having fruit, salads, (ie too much fibre and sugar) and/or other inflammatory ingredients like processed items, eggs, soy etc.
the other aspect for many MC'ers here is histamine issues, both food and environmental triggers causing lots of inflammation in the gut. do you take antihitamines at all?

The Vit D3 and magnesium are also crucial to protecting bone health when taking steroid medication long term.

hope this helps
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Gabes Ryan

"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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Gloria
King Penguin
King Penguin


Joined: 07 Jul 2007

Posts: 4764
User's local time:
2017 Dec 17 - 5:32 PM


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

PostPosted: Sun Dec 10, 2017 7:17 pm    Post subject: Reply with quote

Welcome to the board, Amy!

I was diagnosed ten years ago and have been on budesonide almost continuously since then. Each time I went off of it, I would relapse, in spite of being on an extremely restricted diet. I presently take 3 mg. (one pill) for three days, then no pill, then repeat the cycle. I am stable with this dosage and am not able at this point to reduce it further without having problems.

I have had no issues that I can attribute to taking the budesonide. I do have osteoporosis, but was diagnosed with it before I began the budesonide. My GI, who has retired, encouraged me to stay on the full dose a couple of years ago and wrote a script for an entire year of three pills a day. He saw nothing wrong with me taking three pills per day, even after being on it for eight years at that time. I weighed 83 lbs. and he was concerned for my well being. I only took one, sometimes two a day, so the prescription lasted for over two years.

I took the 23andMe genetic and medical testing and the Promethease report stated that budesonide was of "good" repute for me, according to my genes. I stopped worrying about it at that point.

If you need it to resolve your symptoms, by all means take it, but also keep working on reducing it by getting rid of all inflammatory foods as Gabes suggested.

Gloria
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You never know what you can do until you have to do it.
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