Entocort vs. Purinethol, help!

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tex
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Post by tex »

Yes I know. I've seen Dr. Loftus's presentation before. He cites the Pepto treatment in spite of the fact that Dr. Fine stopped recommending it close to 10 years ago, and in place of it, recommends the diet, alone, instead. You don't see Dr. Loftus recommending the GF diet as a treatment for MC, do you?

He "laments" Dr. Fine's failure to publish his work, because he knows damn well that Dr. Fine has tried, several times, (including again last year), but the "Good Old Boys Club" is always successful at stonewalling him, so that no one will publish his work. As long as they can keep it from being published, they can continue to prevent any real progress from being made in the treatment of MC, (on an official basis, at least).

Tex
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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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Post by Celie »

Tex,
Dr. Fine's website still recommends Pepto Bismol on his website. It says

"The only other drug studied in this condition but one showing the best promise for control of diarrhea, resolution of colitis, and prolonged remission is bismuth subsalicylate (Pepto Bismol). I have shown in a published pilot study that bismuth subsalicylate can resolve diarrhea and histologic colitis in patients with microscopic colitis (published in the journal Gastroenterology in January 1998, volume 114, pages 29-36). "

Where do you see that he recommends diet alone?

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Post by tex »

From his main microscopic colitis page:
How should Microscopic Colitis be treated?
I have studied the use of Pepto Bismol (Procter and Gamble) for the last 6 years and have achieved good results and learned a lot about the syndrome from these studies. However, although Pepto Bismol will relieve diarrhea in 90% and resolve the colitis on biopsies in about 80%, 20-30% experience relapses after they stop the medicine, and 10% do not respond initially. It has now become clear from extensive further research over the last 3-4 years that these relapses, and in the less common instances when there is no intitial response, have been shown by my new sensitive stool testing to be caused by coexisting immunologic sensitivity to gluten in the diet, that is to a protein found in wheat, barley, rye, and oats. Although not the cause of the colitis, per se, the reaction to gluten by the immune system can perpetuate or reactivate the colonic inflammation. Because of this chance of relapse, and because Pepto Bismol is still a drug with at least the potential (albeit rare chance) for side effects or reactions to the dyes, etc., I recommend testing for gluten sensitivity and a gluten-free diet as the first line of treatment for microscopic colitis. This appraoch has brought more relief to the sufferers of colitis than any other form of treatment to date.
http://www.finerhealth.com/Educational_ ... c_Colitis/

That was written roughly 10 years ago. (And yes, I know that he misspelled "approach"). :lol:

Tex
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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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Post by Celie »

Thank you.

Celie
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Post by tex »

Celie,

I have to admit that Dr. Fine's website could certainly use some updating and reorganizing. It's been 5 or 6 years or more since most of those pages have been updated. I suppose he's frustrated at not being able to get his work published, so he seems to devote a lot of his time to diversionary projects, such as music and body building. (Not that there's anything wrong with music and/or bodybuilding, but his site seems to be languishing, while he pursues his hobbies - almost as if he hates to go to work, these days). :sigh:

You're most welcome,
Tex
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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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Post by Celie »

Tex,
It is a shame that Dr. Fine seems to have lost some interest. I know that this group supports his work, but I want to hear all the voices.
That is what I like about this forum. Thank you for hosting it.

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Post by tex »

Celie,

That's just my impression, and I could be all wet, of course, but I recognize the signs - been there, done that.

We're a very diversified group, and you're right, of course. After all the rhetoric, we still have to sort it all out for ourselves, and work out our own personal treatment program, to suit our own situation, and our own lifestyle.

You're very welcome, and thank you for your contributions,
Tex
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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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Post by JLH »

No, I didn't see this thread. (Maybe I just don't remember. I mostly skim here because of my bad eyes.) I always wondered how that woman fared. Very sad. I know she was desperate but she could have waited a little bit more and tried Tex's suggestions.

I also keep wondering about that woman with the child a the U. of Iowa and how she came here and disappeared right away. :sad:
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Post by Zizzle »

I'm now a fan of Pepto (combined with diet of course). I've had a significant flare for the past 2 weeks and finally started taking 2 Pepto tabs in the morning, 1 mid-day and 1 in the evening, and I'm feeling MUCH, MUCH better. In fact, I didn't even have a BM yesterday! YAY! This flare felt stress and diet induced, but once it was on it's way, there seemed to be no stopping it no matter how well I ate. I was ready to try Entocort, until I remembered my trusty bottle of Pepto. Phew.
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Post by tex »

Zizzle,

:thumbsup: Good for you. Pepto-Bismol gets a lot of bad press here, because a fair number of members here seem to have adverse reactions to it, but for others, it works fine, and about 15 years ago, Dr. Fine proved that in combination with the GF diet, it has better than an 85% efficacy rate, (and that's a mighty high rate, as med effectiveness goes).

Tex
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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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Post by TooManyHats »

The discussion of Entocort on this thread is very disturbing. The list of side effects worries me as I've been on long-term prednisone once before. I watched the whole course from the Mayo clinic as well. The Lialda scares the hell out of me, and that's my doctor's recommendation.

This morning I am much worse after taking a 1/2 packet of Questran last night. I was in the bathroom 3 times within 10 minutes.

I guess I'll give the Pepto a try because I simply cannot live like this. I went from one semi-formed bm daily to 3 episodes of D already today (and I haven't eaten anything yet--and am afraid to at this point). Very depressing.
Arlene

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Post by Joefnh »

Arlene I think if we look at any medicine out there, we will find out that there have been some bad reactions. When you have millions of people taking these meds its bound to happen. Even for meds we consider safer over the counter meds it happens. Bottom line is we need to be well informed about our choices.

As mentioned often here, diet is the most important step in the healing process, I don't remember have you been able to address the diet as of yet?

As far as most of the treatments I am aware of, they take a while to start working on MC I know for Entocort, Lialda and Imuran, these take several weeks before they start calming the symptoms down.. I have also taken Questran and at least for me it took 1 full packet twice a day initially to see any benefit.

I know its frustrating now as we all want to see improvement quickly, but if there is anything that MC has taught me its patience.

Thanks for the update and hang in there, it does get better.

--Joe
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Post by TooManyHats »

Yes, I'm g/f, d/f, s/f and working on low FODMAP. At this point, my diet consists of chicken, beef, rice, potatoes, celery and carrots. The only thing different about yesterday was the fact that I ate some Lundonberg Rice chips (or crisps--not sure exactly what they call them), other than the Questran. And it wasn't like I just had 2 bms instead of 1, I had 3 within 10 minutes, all D. Diarrhea is one of the side effects of Questran (I know that's not the usual side effect, but I could be one of the "lucky" ones).

Tomorrow I have a call back for a 2nd interview on a job that I just might get. This backwards step is now completely unacceptable in regards to my potential work situation. I've already taken the first 2 Peptos and will continue with Dr. Fine's recommendation of 8 for 8 weeks combined with diet. I'll taper off rather than stop cold turkey because I can't see that abruptly stopping any medication that helps with the D is a good idea. I don't know what else to do, but I have to do something.
Arlene

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Post by Joefnh »

Arlene you are certainly doing well on the diet and it sounds like figuring out what if any meds will help you the most is the next step. As you probably know stress is also a big factor with MC. Could the job interview be playing a part in this? With that said though, the bms being so close to the Questran dose does make you wonder if you are one of the 'lucky ones' .

Hopefully you can figure out soon what the best path forward is. There are several meds that have been beneficial for the folks here.

Good luck with the job interview and finding a med that will work for you.

--Joe
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Post by Zizzle »

Arlene,
Let me know you you do with the Pepto. I tried to do the 8x/day regimen, but I just couldn't take so many. I respond to very low levels of meds anyway, so my 2-4/day seem to make a difference. I was taking Pepto chewables in the beginning and had terrible bloating. I think because they are full of calcium carbonate. I do much better with the tablets.
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