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
How long can you stay on Entocort?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
How long can you stay on Entocort?
Amy Lorenzen
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:
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
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:
Low-dose budesonide for maintenance of clinical remission in collagenous colitis: a randomised, placebo-controlled, 12-month trialConclusions
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.
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
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
- Posts: 8330
- Joined: Mon Dec 21, 2009 3:12 pm
- Location: Hunter Valley NSW Australia
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
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
Gabes Ryan
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
"Anything that contradicts experience and logic should be abandoned"
Dalai Lama
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
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
You never know what you can do until you have to do it.