New Studies On Longer Treatments With Entocort

Discussions on the details of treatment programs using either diet, medications, or a combination of the two, can take place here.

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tex
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Post by tex »

Maxine wrote:I notice on the label it says nothing about MC; well, it wouldn't would it, after all, we only have a nuisance disease! It says it's for Crohn's and UC.
That's true of all drugs used to treat MC. There are no drugs labeled for MC - it gets no respect at all, in medical circles.
:lol:
Maxine wrote:His answer was that it is healing my gut, and if I didn't take it, I'd have more pain and bad d if I slipped up on my diet or got glutenated. He theorised that with no meds it could be years before I could have raw veggies, cooked broccoli and cauli (I miss you two!), and fresh fruit. With the 5-ASA meds I could be looking at 18 -24 months and I'd be able to try reintroducing problem foods.
Pentasa is a good med - much better than Asacol, IMO. I agree, (as do virtually all of us here), that your symptoms will disappear significantly sooner, if you are taking a drug, and following the diet, concurrently. However, I disagree with his basic premise in that quote, concerning how the gut heals. For one thing, there is no research that validates his claim. According to Dr. Fines research, the inflammation fighting drugs, (such as the 5-ASA meds, the corticosteroids, and even the anti-TNF drugs), can only partially suppress the inflammation - they never do a 100% job. They do indeed help to suppress the pain, while the gut is healing, but it is the diet that actually allows the gut to heal. If your doctor disputes that, he should do a colonoscopy exam, (with biopsies), on some of his patients, who have been treating their MC with drugs for years. He would find that their colonic epithelial histology, would still show the markers of MC, probably not much improved from it's state when the initial diagnosis was made. If he were to do the same thing for patients who have been carefully following a diet for several years, which excluded all of their intolerances, he would find that their colonic epithelial cells have actually healed. (If they have slipped up on their diet, though, they would also still show the markers of MC, of course). The bottom line is, regardless of whether you use drugs, or diet, it's still going to take at least a year and a half or longer, before most people will be able to add raw vegetables and fruit back into their diets, and most people will take longer. Besides, 18 to 24 months appears to me to be "years", isn't it? :lol: We are all different, of course, and some take much longer to heal than others, but I seriously doubt that anyone would be able to tell any difference in the time required before fruits and vegetables can safely be added back into the diet, regardless of whether or not they use meds, simply because meds do not actually heal the gut - they mostly just mask the symptoms.

It certainly is true, though, that if you are taking a med, and you slip up on your diet, the med will help to keep the symptoms from getting as bad as they otherwise might have been. That's a two way street, though. If you slip up on taking your meds, the diet will help to keep the symptoms from getting as bad as they otherwise might have been. :wink:

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 harma »

Hello Maxime, good question, what part of the healing is due to the meds and what to the diet. I am also gluten, soy, milk and some other stuff free. I am on budenofalk (almost same as entocort). As soon as I start taking those pills the D was gone. How I experience it, it helps only for the D. Because after starting using Budenofalk, the pain started, cramping, uncomfortable feeling, like having stones in my bowel (I don't mean C). So I don't see how budenofalk helps against my cramping. It really got worse when I started to eat gluten free and using all the gluten free replacements from the shell in the supermarket. My idea is it is mostly due to corn and other replacements of gluten containing wheat. Once I changed my eating pattern dramatically, I got better. The only starch I am using now is rice. So my experience is different than you doctor is telling you. But I don't know how 5-ASA works, so that could be different from budenofalk. During my last visit at the GI, he told me that the medication, like entocort, does not cure the disease, only suppresses the symptoms. As soon as you stop it comes back. This is also shown in couple op medication trails. It they give Entocort or budenofalk for 2 months or six months, in 80% of the cases the D comes back and patients have to start using again. To figure out if you still need the medication you can try temper down your medication. I tried it, last week. Normally I take my pill between 7 and 8 in morning. It didn't work, later that same morning I took my pill. You will feel the difference immediately, restless bowels. Tex says it takes at least 6 months, for you gut to heal (and I believe the diet heals the gut, not any medication). I am a bit like okay, I will give it a try and see it and than believe it. But the more and more I follow the advices on this board, the better I am getting and the more I see and believe how right they are here. The investment in enterolab was worth every penny.

harma
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Post by ant »

Hi all,

I picked up the "Salofalk 1000mg Granu-Stix" drugs from the GI clinic yesterday. They are "Gastro-resistant, prolonged-release granules (mesalazine)". They are granules in small sachets (50 sachet to a box). Manufactured by Losan Pharma GmbH and marketed by "Dr Falk PHARMA GmgH". It says blood tests and urinary status "should be checked before and during treatment, at the discretion of your doctor". Well, my GI never suggested any such tests. Hmmm.

Also, yesterday Budez CR (generic Entocort) "budesonide controlled released capsules" arrived by post from Alldaychemists. They are made by Sun Pharmaceutical Ind Ltd.

I am going to talk to my GP about Salofalk in due course and certainly before I take it.

All best, Ant
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Post by teagirl »

Hmmm.. if Pentasa (which I take) and Asacol etc are all 5-ASA meds, how do they differ? Are Ant and I basically on the same drug?

My Pentasa is in medium size beige tablets. They are very grainy in appearance and 'taste' - they go down better with rice milk and don't touch the sides. With water they got stuck and started to dissolve a little. They then stuck in various places as they went down, but they did go down eventually.

The manufacturer is FERRING BV. There's no generic (boo hoo).

Is the situation similar to acetamenophen where it's the same basic painkiller but manufacturers add things then market as their own product?

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Post by tex »

Hi Maxine,

The primary differences in the 5-ASA meds are centered upon the way that they are delivered. They all have some sort of chemical mechanism which delays activation until they get to where they should do the most good. Most are activated as they reach the lower third of the small intestine, (the ilium), or the colon, but Pentasa is unique in that it begins to be activated sooner, (in the stomach, to a small degree). The active ingredient is basically the same in all of them, but the other ingredients are mostly different.

For an explanation of how the various delay mechanisms work, please read the third post on this page, (post number 3, I believe):

http://www.perskyfarms.com/phpBB2/viewt ... n&start=30

Because of the different ways that these individual formulations are activated, some work better than others, for individual patients, depending on their unique digestive system chemistry, and influences such as bacteria, parasites, etc.

The differences in compounds based on acetaminophen, are basically simply related to the various other ingredients that it is compounded with, rather than with the mode of activation, (such as in the case with 5-ASA drugs).

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 kmegan1 »

Bumping post.
MulkeyJ
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Post by MulkeyJ »

I wish I could take it for six months, maybe I could get back to some semblamce of normal life. But I can't afford it. Can't afford even the generic, so it's take it for a month or two a year, or go completely gluten free, which I have found impossible to do, due to lack of family who wants to abide by the restrictions, and not having a health food store within 60 miles, and not enough money to buy all of that gluten free food on top of the other food I have to get for the rest of my family. So I am restricted to the house, I guess for the rest of my life at this point.
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Post by tex »

The generic product costs $40.50 for a month's supply of 90 capsules.

You don't have to buy special gluten-free products. Meat and potatoes are gluten-free, so are all fruit and vegetables. If you cook from scratch, the cost is basically the same, whether food contains gluten, or not.

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 harma »

it is a great misunderstanding that gluten free food has to be more expensive than "normal" food. Okay if you want gluten free replacement for everything like cookies, cereals, bread, crackers and than kind of stuff, than it will be much more expensive. But if you avoid that and just choose products that just don't contain gluten, than you don't have to spend more. Rice is very cheap and gluten free. same can be said for rice cakes.

As tex already mentioned, cooking from scratch is the best and cheapest way to eat gluten (and soy and milk) free. It is the processed food what makes the diet complicated and more expensive.

It takes a while to get used to it and it cost some time to find the right products. But also with a tight budget, it is very well possible. Gluten free food does not have to be bought in organic shops or in organic shops. I buy all my food in the supermarket.

Please Mulkey J don't give up so easily, your life does not have to be like this forthe rest of your life, even if you have no money for medication and no health shops near. Just start with a very simple and basic diet of fruit, vegetables, fish (if money is an issue, canned fish like salmon, sardines, mackerel is free of gluten, soy and milk and cheap), meat and rice If you go to places where it is difficult to get proper gf/sf/df food, bring your own. It isn't always easy and some people may give you a strange look. But that is their problem. From experience I can tell you it is worth the effort.
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Post by tex »

It is also possible to buy certain gluten-free cereals and baking mixes for roughly the same price as conventional alternatives. For example, General Mills has reformulated a number of their Chex breakfast cereals to be gluten-free, including Rice Chex, Chocolate Chex, Cinnamon Chex, Honey Nut Chex, and Corn Chex, and they did not raise the price when they reformulated them. Other options are Kix, (also by General Mills), and Trix Swirls.

Betty Crocker now makes Gluten-Free Brownie mix, Cookie mix, and Cake Mixes, in Devil's Food and Yellow flavors, at a very reasonable price.

All of these products are available in most regular grocery stores, so they are priced very competitively, and more mainstream products will probably be reformulated to be gluten-free as time goes on, because there appears to be to a lot of consumer interest in these products.

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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Post by ant »

Dear MulkeyJ

Unless I am mistaken this is your first post. So :welcome: :welcome: to the PP family.

I am so sorry to hear you do not have support from those around you for taking on the diet route. As others have said it does not have to be expensive. Simple cooking like chicken, fish, well cooked (peeled) vegetables and rice is what it is all about.

I take the generic entocort and have now been able cut down to one every other day, so it is now not too costly. However, with three a day it is costly (even with the generic). Perhaps you could get by with two a day to start with?? Others have, but we are all different.

I really hope you can find a way to take charge and I wish you all the very best. Please keep asking questions. We are here to try and help with whatever advice or information we can. Ant
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