I am new to all of this!! Nice to meet you!

[Helovesme]

Hi! My name is Bev. I have just been diagnosed with Lymphocytic Colitis...which I think is the same as ME?? I have been sick for the last 6 years, running to the potty. I know where every potty is in my entire town. I finally went to the gastro...after waiting way too long. I also did the enterolab testing for gluten intolerance. I have a celiac gene and a gluten sensitive gene...I also tested positive for gluten intolerance. My scopes showed LC. I am glad I finally know what is wrong with me. I have been given a prescription for Entocort...also I have been gluten free since my scopes. How safe is the Entocort....have any of you had good results with it? I would appreciate any help, advice, or encouragement you can give me...and I am so glad to find this forum!

[barbaranoela]

Hi Bev-------welcome to a most informative forum/family and happy that U found us~~

I am an oldbee here-----and have been fortunate to be walking that wellness road for quite a few years now---
I was MCC--first GI was like *duh*---and I being double *duh* hung with him for a few years until I was practically spending all my time from the bed to the *throne*

Got to 2nd GI who was my miracle man----the only issues being that I had to go the prednizone route for a bit and then was on Colazol as a maintenance ---

I will tell U that Entocort was a horror for me---caused me neurological issues---and I was only on it for 2 dayz-
But the favorite quote here is---* we are all effected differently in the use of drugs*
so dont get discouraged---many find Entocort very helpful--

Keep checking in cus there will be many answers to your questions---I am not to versed in the technical workings of meds-----as I wasnt as bad as many here are/have been-

Barbara

[tex]

Hi Bev,

Welcome to our internet family. You seem to be doing all the right things, so you should be on your way to remission, soon, with any luck at all. Most of us here are able to maintain remission by diet alone, but the Entocort will allow you to reach remission sooner, so that you won't have to deal with the D as long, while your intestines are healing from the benefits of the diet. Did you also have an Enterolab test for casein, (the primary protein in all dairy products)? If not, you may need to cut all dairy products from your diet also, since most of us are also sensitive to casein. About half of us are also sensitive to soy.

Entocort EC is arguably the "safest" effective medication available for treating MC. Unlike the other corticosteroids, Entocort is enteric-coated, so that it doesn't become activated until it reaches the lower third of the small intestine, and the colon. That means that only about 10 to 15 % of the active ingredient is absorbed into the blood stream, which greatly minimizes the risk of the side effects that the other corticosteroids are notorious for. As Barbara mentioned, a few members react adversely to Entocort, but the majority of the members who try it, have very good results with it, and it will usually help to bring remission in from 2 to 6 weeks.

Again, welcome aboard, and please feel free to ask any questions that come to mind.

Tex (Wayne)

[Olivia-Micro-Colitis]

Welcome!!!! I'm so glad you found us!!!! I'm olivia and i have LC and i am currently taking entocort. i personally am not happy with it because i haven't seen a change really. but i do seem to be getting sick with other symptoms such as headaches, muscle pain, vomitting. i'm so sorry you had to wait so long. When i found out it was almost like a relief that i had an answer and knew i wasnt crazy!
Bev what was your 2 days like?

[MaggieRedwings]

Welcome Bev!

Another old-timer here but can tell you that sticking around and asking what you need to will give you more knowledge than any GI doc can. Sorry you had to find us this way but I am happy to have met you.

Maggie

[Helovesme]

Wow...thanks for the welcome I have decided I am going to try the Entocort...I have been sick too long and I am too thin. What should I watch for as far as side effects? I am to take 3 capsules for 4 weeks, 2 for 2 weeks, and 1 for two weeks. Do I take the 3 today at the same time? Should I take them on a full stomach?

I tested 7 for fecal anti casein...under 10 is normal. I have not cut out diary yet. I will if I need to. I am trying to be creative with the gluten free diet. I honestly feel like I have been on a wild goose chase. I am glad I know what is causing my problem. It is unbelievable that gluten can cause so much damage. I should have gone to the dr earlier...I had a few episodes of not being able to make it to the bathroom...that was scary. Within 15 minutes of ingesting gluten...I was sweating...and praying to get to the bathroom...I did not make it...I thought I had colon cancer I went to my general dr...he did a celiac panel...he called and said test was negative, I had low calcium and potassium. He said to take calcium supplements and eat more bananas.... I asked for a referral to see a gastro. In the mean time, I did the enterolab testing. Up until that date...I knew nothing of gluten. I had the scopes done...and I had some esaphogas damage and the lymphocytic colitis....no sign of celiac. I am scheduled for blood tests in two weeks....I have hashimotos, so I am checking those numbers, also b12, ferritin, cbc, calcium, etc. Do most of you have vitamin issues because of the D? How long does it take to feel better? I am tired a lot. I push myself. I have lost more weight in the last month, because of D.
Thanks again!
Bev

[ant]

Dear Bev

Welcome from Hong Kong!!. I am by now a "halfbe" not "newbe" nor "oldbe": been here on the board just under a year. For me entocort and a GF, DF, SF, legume free and nightshade free diet has given me my life back.....almost all thanks to the wisdom here on this board.

Be aware that the standard medical timeframe for tapering off entocort can be too quick.... it can take 6 months to a year for the gut to heal. Coming off too soon can cause a relapse flare. I was 7 month on three pills a day plus the diet, then 2 months on 2 and for the last month one 1 ( I am still on one a day). Most advise that while you are on 3 you should take 2 first thing in the morning and 1 at night. When you taper down to 2 and 1 they should be taken first thing in the morning.

Vitamin problems are very much part of having MC and you need to find ways to supplement - but not with pills that have gluten, diary or soy in them. I have even IVed on vitamins and minerals when I realized how low they were. Also osteoporosis should be checked out as a result of probable malabsorbtion.

I suggest you read as much as you can on this site. Use the search function (not the google search (the menu list above it).

All the very best in your journey back to remission.

Ant

[tex]

Bev,

Personally, unless I am expressly told to take a med on an empty stomach, I always take pills with meals, or immediately after eating, because absorption is normally better, with food. This is especially true for pills like vitamins, since most of them are fat-soluble, and they need the presence of fat, in order to be absorbed into the bloodstream. In the case of Entocort EC, I don't believe it matters, because they have an enteric coating, so they are going to remain intact until they are waaaaaaaaaaaaay down in the GI tract, where they will do the most good. You don't want the budesonide, (the active ingredient), to be absorbed into the bloodstream, because that's the cause of the side effects that come with the other corticosteroids.

As far as possible side effects to look out for, though Entocort sometimes causes existing GI issues to become worse, the greatest risk of an adverse reaction comes in the form of neurological issues. The symptoms of an adverse reaction to look out for are vertigo, dizziness, balance problems, a confused state of mind, and/or vision problems, (such as blurred vision). Presumably, it's possible to have an anaphylactic reaction, I suppose, but that would be extremely rare, of course. If you should happen to have any serious symptoms of an adverse reaction, stop taking it immediately, and/or call your doc, (or go to the ER, if the symptoms should seem severe enough to be life-threatening). If you happen to turn out to be allergic to Entocort, the symptoms will usually begin showing up by the second day, and may become worse, if the drug is not discontinued. Sometimes, reducing the dose will eliminate the symptoms, but in most cases, it's necessary to discontinue taking Entocort, if neurological symptoms develop.

You're one of the lucky ones, (few of us are not casein-sensitive). Be aware, though, that any form or enteritis, (intestinal inflammation), causes the suppression of the production of the lactase enzyme, in the brush border region of the small intestine, resulting in temporary lactose intolerance. After the enteritis passes, normal lactase production will resume, but until that happens, ingesting milk products can cause gas, bloating, cramps, etc. You should be able to use lactose-free milk, though, and dairy products such as yogurt and aged cheeses, since those products contain very little lactose.

Most of us are very familiar with the "accidents" that you describe, and as far as I am concerned, that feature of the disease, alone, is enough to disqualify it from the "nuisance disease" category that many/most GI docs place it in. No one truly understands this disease unless they have it. When you actually nave the disease, you recognize it as the debilitating, and life-altering disease that it truly is.

Yes, malabsorption is often a serious problem with MC, just as it is with celiac disease, and the disease makes us susceptible to other autoimmune diseases, unless we address the gluten-sensitivity, and get it completely out of our diet. According to our member survey, for example, we are at least 7 times as likely to have thyroid problems, as anyone in the general population, and many of us have hypothyroidism.

Because of the malabsorption issue, it is highly advisable to take a sublingual form of B-12, (a lozenge designed to be disolved under the tongue, where it can be absorbed directly into the bloodstream). In fact, lozenges which also contain a proportional amount of folic acid, are very helpful, since adequate folic acid is necessary, in order for the body to be able to utilize B-12. Vitamin D3 is also very, very important, and most of us are deficient. The weight loss is obviously due to poor digestion caused by MC, and the nutrient malabsorption problem, of course. The fatigue is a part of MC, and so is brain fog, for many of us, because gluten can cross the blood/brain barrier, to cause neurological issues. For those who have it, brain fog is usually the last symptom to disappear, as the healing progresses.

We keep a listing of member results of Enterolab tests, because sometimes it can be very helpful to review the test results of others, and compare them with intolerances, treatment results, etc. Gene test results are especially interesting, and in many cases, they definitely seem to offer clues concerning intolerances, disease severity, etc. Would you mind posting your test results, and giving permission for them to be listed in our database? The results are tabulated here:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10089

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=10084

Thanks,
Tex

[Gayle]

Hi Bev,

PP welcomes you ---

It is advisable to take your Entocort at the same time every day. All pharmacists will (should) tell you that.

Personally, I have had the best results by taking my Entocort first thing in the morning – before eating. I then follow with my requisite 2 cups of coffee while reading the paper, and then have breakfast.

The rational for this type of timing is that this drug is formulated not to be released/activated until it gets down to the lower part of the small bowel and colon. Therefore, I would like it to get there as quickly as possible, and in as unobstructed a fashion, as possible. It doesn’t bother your stomach because it passes right on through without being altered in that part of the GI system. Also, it is easiest to keep on a predictable metered schedule that way -- assuming you get up at roughly the same time daily.

I make note on a calendar each time when I have taken this med --- and especially when I was taking the full 9mg dose, I also make a note of the exact time I took it.

A few people do seem to experience a vast variety of issues with this drug. I can honestly say that this is one drug that doesn’t bother me a bit, although I do think it may contribute some to sleep issues. When I was tried on a couple of the 5-ASA’s I ran into a great amount of difficulty with them, while some people do just fine with them.

I don't know what others do, but when I get a new prescription for someting such as these GI meds, I don't take the full 9mg dose first thing. I start with 3mg and day for a couple days, then increase to 6mg for a couple days before escalating to the full 9 mg. I'm just kind of 'test dosing' I guess.

So bottom line --- you need to see what works for you.

I think the duration of time your Doc has you at full strength (9mg/day) is rather short. Play it by ear here and if you are not back to normal activity before 4 weeks, I would discuss with him/her the advisability of reducing the dosage so quickly. Everyone is an individual, however. 8 weeks at full dose (9mg/day) --- before tapering is more customary.

As you follow along here you will see that there are folks here that maintain on Entocort 3mg/day, and some that maintain at 3mg/ every other day. But that is for the future thinking. See how YOU get along for now.

Don’t be fooled into believing that Entocort is a magic bullet that will solve all issues PDQ. It is not. In other words, there will be up and down days for a few weeks. As things start to improve 2 good days may be followed by a more difficult day again. Hold the course, be patient, and gradually things will come around for you. You can augment with a little Imodium if that helps, but should be able to discontinue that rapidly as things improve.

I have a good friend who was diagnosed with CC within about a month of me. While in my case, I respond to Entocort fairly rapidly, my friend was not so fortunate and it took many more months to get her into some degree of remission. You will also notice the whole gamut of responses here in this forum.
It’s really a ‘play by ear’ situation.
You need to get back to leading a normal life. If Entocort gives you this freedom ---

Good luck,


Gayle

[angy]

Bev

sorry you have been diagnosed with LC, you have come to the right place here ...We are a wonderful family and will help you as much as possible to enable you start the road to recovery... and hopefully remission... From what i have read on this thread you have been given some good advice.

There is a wealth of knowledge here and you will not find this with any medical doctor...our members are real life sufferers and their support is what made me well today...enjoy reading the posts...

.I wish you the best with your recovery...

[Helovesme]

Thank you all for your advice and encouragement! I did take the entocort today. I had dinner out...gluten free meal....usually I am running and I mean running to the bathroom within 15 min. Well...tonight I did not have to do that It is a miracle...and I really mean it...it is possible it worked that fast? I have felt no side effects as of yet. I have had so many life changes in the last month....going gluten free...diagnosed with LC....a job change....I know change is good I am so excited to start feeling and better and have more energy...and gain a few pounds...I will keep you all posted on my progress. I am so glad I found a new family here....I am planning to keep reading and learning! Again, I can't say how thankful I am for this forum!

Blessings!
Bev

[tex]

Bev,

Yes, it's possible. The combination of the diet and Entocort can sometimes have a powerful effect on inflammation in the colon, when everything works right. Please don't be disappointed if you have a few setbacks, though, because it's rare to not have a few minor detours, on the path back to good health.

It's good to hear that you're making such good progress, and you're feeling so positive. That's very encouraging.

I hope your rapid progress continues.

Tex

[Helovesme]

Bev from Colorado:

A) Gluten Sensitivity Stool and Gene Panel Complete *Best test/best value
Fecal Anti-gliadin IgA 17 Units (Normal Range is less than 10 Units)

Fecal Anti-tissue Transglutaminase IgA 5 Units (Normal Range is less than 10 Units)

Quantitative Microscopic Fecal Fat Score Less than 300 Units (Normal Range is less than 300 Units)

Fecal Anti-casein (cow’s milk) IgA 7 Units (Normal Range is less than 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0201

HLA-DQB1 Molecular analysis, Allele 2 0301

Serologic equivalent: HLA-DQ 2,3 (Subtype 2,7)

[tex]

Now I see why you had such a quick response to Entocort - you're aren't experiencing an autoimmune reaction, (negative Anti-tissue Transglutaminase IgA). That's rather unusual, on this board.

Many thanks for sharing these results,
Tex

[Helovesme]

Now I am just thinking about this...since it is unusual...do you think the Gastro made a mistake in my diagnosis? I am not clearly understanding what the anti-tissue IgA means. I know I should not eat gluten, and I also think I understand the genetic marking. I also have hashimotos..have been diagnosed with that 24 years ago. My main issue is chronic D....which leads to being tired...which I have struggled with for the past 6 years. How would you know if you were IgA deficient?

Thanks!