Poll About Entocort

Polls relevant to Microscopic Colitis, and related issues, can be posted here, to allow for the collection of data that might help to shed some light on this disease, and it's treatment options.

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Have you used budesonide (Entocort or Uceris) in your recovery program, and if so, what was your experience?

No, I've never used budesonide.
15
31%
I tried it one or more times, but it did not seem to help me.
10
20%
I used it only once, for short-term use (less than a year), and it worked well.
4
8%
I used it twice, for short-term use (less than a year each time), and it worked well both times.
4
8%
I used it several times, for short-term use (less than a year each time), and it always worked well.
2
4%
I used it only once, and it seemed to work initially, but it eventually stopped working for me.
2
4%
I used it more than once, and it seemed to work initially, but it eventually stopped working for me.
1
2%
I've used it for long-term use (a year or longer), but I no longer use it.
5
10%
I've used it for long-term use (a year or longer), and I still use it.
6
12%
 
Total votes: 49
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tex
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Post by tex »

Louis,

Here's what is posted on the Microscopic Colitis Foundation website, regarding LDN:
Treating Difficult Cases

Some cases are unresponsive to conventional treatments. There can be many reasons for this, but it can be especially problematic when additional autoimmune (AI) diseases are present. There doesn't seem to be any medical research available to either support or disprove this observation, but epidemiological evidence appears to suggest that in cases where various conventional treatments have been tried without success, there is a possibility that one or more issues associated with other AI diseases may be preventing remission of MC symptoms.

Low dose naltrexone

In situations such as this, some patients have been able to resolve their MC symptoms by the use of low-dose naltrexone (LDN). While still in the experimental stages, and not yet accepted by most mainstream medical practitioners, treatments using LDN have established a surprisingly good success rate among many AI diseases that are otherwise refractory to treatment.

This is an off-label treatment for naltrexone, using doses that are only a small fraction of the amount normally prescribed for it's labeled uses. But if taken properly, it is said to reset the immune system nightly, resulting in the suppression of autoimmune-induced inflammation. Since LDN does not appear to be effective for patients who have only MC (and no additional AI diseases), and yet it does seem to be effective at relieving MC symptoms for many patients who also have other AI diseases, it seems likely that LDN may be capable of resolving MC symptoms by virtue of effectively treating other AI issues (other than MC) that have been preventing the remission of MC symptoms, despite a treatment program that would normally be expected to resolve the MC symptoms.
http://www.microscopiccolitisfoundation ... tions.html

Currently, there aren't enough people who have tried it (who are members here) to allow a respectable number of responses to a poll, but we will probably try a poll at some point in the future, after enough people have tried it so that a poll might provide some meaningful results.

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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JMulkey
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Posts: 58
Joined: Fri Feb 26, 2010 1:12 pm

Post by JMulkey »

I used it long term. My problem was I could not tolerate a full dose 9mg. So my max was 6. And I truly couldn't afford it, even from out of country. When I say I am on a limited budget, I really mean I am on a limited budget. So there were weeks where I had to go down to one every couple of days, or even one every three days, and it never once put me into remission. Even with the food limitations, the D never stopped. It just wasn't as frequent. So after three years of off and on, I finally said ok, this is ridiculous and I went off of it for good.
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