Trial & Error for Entocort Taper (Harma How Are You Doin

[DebE13]

About a month ago I tried reducing my Entorcort from 3mg once a day to every other day. It didn't work so I'm still taking the 3 mg everyday. I've been GF/DF for 6 months and SF/EF for 4 months. Today I'm trying to do 1.5 mg (or the closest I can get to splitting a pill) everyday. Not sure if I'll have any luck but if it doesn't work I'll just go back to the 3 mg. The pill was easy to divide and I'm assuming the large granules are coated with some kind of protectant but it did cross my mind if I should be taking it out of the capsule. I'm not aware of a smaller dose that is offered and recall Harma posting that's what she did. I may be pushing myself too soon but I'm just trying to see what happens, maybe a smaller dose everyday will be more agreeable to my body.

It's confusing because if Entorcort actually slows the healing process, I want to take as little of it as possible. Without it, the water D returns quickly. I am vigilant about my diet and have a variety of BM's daily ranging from Norman to loose to occassional D. I'm satifiied with that aspect but the other side effects of MC are still very instrusive to daily life. I'll be seeing the eye doc soon to update my RX and am not hopeful at all that he'll tell me the reasons behind my horrible eye pain and burning. I have no choice but to deal with the fatigue and hope that will improve as time goes on.

I know healing can take years so I'm looking for opinions if I'm rushing things or not. I know there's no set-in-stone answer but I seem to be at a standstill with progress, although thankful I'm not moving backwards. The most curious part (if that's the right word) is it seems my indicators if a food agrees with me or not is not D but stomach aches, which would be common, and severe fatigue/general feeling of being "not right."

[brandy]

Hi Deb,

Happy July 4th! We are having a bushel and a half of hard shell crabs to celebrate that one of the guys got this morning from the Nanticoke River/Chesapeake Bay GF, DF SF yea! They are steamed with Old Bay seasoning.

This will be short as I'm not on my ergonomic keyboard.

I believe Harma pours some out of a capsule to go down a 1/3 or a 1/2. We miss you Harma!

I hung out at the low end of Ento for what seemed like awhile. Yes, I had fatigue as an indicator of problematic food.

I drifted towards paleo at the low end of my taper I think b/c Marybeth recommended the Loren Cordain paleo book b/f I got off of Ento. When eating more paleo I get a trend towards constipation. On days I eat less paleo I don't have constipation. One thing to consider try going paleoish for say 2-3 days and see if you get more firmness--consistency.
Cordains take is that anything with an ingredient list will cause inflammation and that the whole category of grains will cause inflammation. During my taper I was never able to eliminate grains but I tried to minimize them.

Another thought is to google fruits/vegetables that reduce inflammation. See if you can add more of these to your regimen at low end of taper. (I'm thinking you have histamine issues so I know you have limited options.) For example most of us can't eat a bowl of blueberries but maybe try 4 or 6 blueberries per day and test. If you can tolerate they are anti inflammatory.

A third thing to try and I wish I'd done this months sooner is to add homemade chicken soup or bone broth to your regimen. I've never done the bone broth but I started making chicken soup about 6-8 weeks ago. I'm making a crockpot of it about every 5 days and freeze it in single serve zip locks. I'm eating a serving a day and the chicken soup is really helping with healing and I believe is also anti inflammatory. There was discussion about chicken soup when I signed onto board but I didn't have the energy to make it back then. In retrospect I wish I was making the chicken soup 8 months ago.

I would say don't rush it low end although I know how rough Ento is to be on. Perhaps take a look at your diet now and experiment with minor modifications to make it more anti inflammatory to see if that gets you more consistency and off of Ento faster.

Brandy

[CathyMe.]

About a month ago I tried reducing my Entorcort from 3mg once a day to every other day. It didn't work so I'm still taking the 3 mg everyday. I've been GF/DF for 6 months and SF/EF for 4 months. Today I'm trying to do 1.5 mg (or the closest I can get to splitting a pill) everyday. Not sure if I'll have any luck but if it doesn't work I'll just go back to the 3 mg. The pill was easy to divide and I'm assuming the large granules are coated with some kind of protectant but it did cross my mind if I should be taking it out of the capsule. I'm not aware of a smaller dose that is offered and recall Harma posting that's what she did. I may be pushing myself too soon but I'm just trying to see what happens, maybe a smaller dose everyday will be more agreeable to my body.

It's confusing because if Entorcort actually slows the healing process, I want to take as little of it as possible. Without it, the water D returns quickly. I am vigilant about my diet and have a variety of BM's daily ranging from Norman to loose to occassional D. I'm satifiied with that aspect but the other side effects of MC are still very instrusive to daily life. I'll be seeing the eye doc soon to update my RX and am not hopeful at all that he'll tell me the reasons behind my horrible eye pain and burning. I have no choice but to deal with the fatigue and hope that will improve as time goes on.

I know healing can take years so I'm looking for opinions if I'm rushing things or not. I know there's no set-in-stone answer but I seem to be at a standstill with progress, although thankful I'm not moving backwards. The most curious part (if that's the right word) is it seems my indicators if a food agrees with me or not is not D but stomach aches, which would be common, and severe fatigue/general feeling of being "not right."

Hi Deb,
I figured I'd chime in as I've been able to successfully decrease my Entorcort. How long have you been taking it? I was diagnosed with LC @ the end of Feb. and began the 9mg/day @ that point. I tried going off completely ( I think in April) and of course went right back to the WD after 9 days. I went back on the 9mg. for a little while and have been decreasing it since then. I am GF/DF/sf and watch everything that I eat. I am now taking 1-3mg. pill every 5 days and am continuing to be symptom free. I would say that you're rushing things as you're continuing to have symptoms (I had similar symptoms...stomach aches, burning in my gut, and severe fatigue) when you decrease the Entocort. I am taking it VERY slowly this time, have a follow up in August with my GI and hope to be off the E. by then. I am feeling so much better so there is hope! I too had eye problems, which are now nonexistent. Good luck to you. I would be concerned about opening the pills as there is a coating on the outside of the pill?

[mzh]

The Entocort EC capsules are enteric coated; that's what the EC stands for. If you take some of the med out of the capsule and just swallow it, you're losing the benefit of the medication; it won't work if it's in the stomach. The capsule gets it to the intestine where it works b/c the capsule dissolves in the intestine, not in the stomach. I'm 99.99999999% that it's the capsule that's coated, not the granules.

I can't seem to wean my self off the daily 3 mg of Entocort either. It works for a while but the D always comes back. I guess we're both eating something we're allergic to.

[mzh]

Just thought of a way to get a lower dose of Entocort in a pill. Some folks have given their dogs 2 mg Entocort as budesonide. They have it formulated at a compounding pharmacy. I don't know how they provide the enteric-coated capsule but anything is possible, I guess!

[maestraz]

Just FYI, I weaned myself off of Entocort over a period of several months, and have been taking Balsalazide 750mg/4 capsules a day since then. The latest prescription label says 4 capsules 4x a day. HUH? I know the original scrip my GI wrote was for 4caps 2x/day, and I'm doing just fine with just 4 caps a day in the AM.

I do occasionally have D, but I don't care, as long as it is predictably in the AM. I do take Immodium several times a week. I don't care about that either. All I want is to be able to get out of my house in the AM most days and live my life for the rest of the day, which I currently seem able to do.

[tex]

The Entocort EC capsules are enteric coated; that's what the EC stands for. If you take some of the med out of the capsule and just swallow it, you're losing the benefit of the medication; it won't work if it's in the stomach. The capsule gets it to the intestine where it works b/c the capsule dissolves in the intestine, not in the stomach. I'm 99.99999999% that it's the capsule that's coated, not the granules.

Yes, you are correct, the enteric coating is on the capsules. If I understand her correctly, Harma simply discarded the portion that she did not want to take, and she took the rest in the capsule, so it should have worked normally for her.

If the budesonide is taken without the capsule, I'm not sure that it will be totally ineffective, however. Here is what I believe will happen:

Research shows that only up to 19% of the budesonide in Entocort EC is absorbed into the bloodstream (normally). If the budesonide is taken sans capsule, most of it will be absorbed into the bloodstream as soon as it passes into the duodenum. IOW, it will be absorbed in the same way that prednisone is absorbed and it will become active systemically. Whether it will be more or less effective for treating intestinal inflammation than it would have been if taken in the enteric-coated capsule, is open to argument. I suspect that it will be less effective, because it will be distributed to all parts of the body, rather than concentrated in the ileum and proximal colon. Therefore, like prednisone, the efficacy will be dose-dependent.

I'm just guessing, since these are pretty much uncharted waters. One thing is for sure, though. If taken without the enteric-coated capsule, budesonide will perform very similarly to prednisone, and it will almost surely cause a much higher than normal level of side effects (similar to prednisone) relative to any given dose.

Tex

[DebE13]

Thanks Brandy- I've started to look through the Paleo cookbooks and plan to give that a try. I'm still very limited with my diet now, mostly eating rice, potatoes, and meat. I'm starting to experiment with fruits and veggies trying to be careful about the high histamine ones. The entocort is nothing compared to the prednisone so I'm ok with the idea of sticking with it because it seems I have to. I supposed being 6 months into trying to heal is still a relatively short time so I'll have to be more patient. Sounds like you had great plans for the holiday, hope you had a terrific time!

Suze- Right now my trips to the bathroom are in the AM before work with occassiona D. That's doable for me too right now compared to awfulness of last year in particular. For the most part the D doesn't interfere with my plans as long as I don't leave the house before I'm finished with my morning "routine." We're planning to go to the Red Cliff Pow Wow this weekend which means we'll be on the road for about 6 hours round trip. I'm a bit worried about figuring out what to bring for me to eat but I'll make it work. I'm hopeful that the Native American feast that's there might have some things that are Deb friendly, but I know in the end I will be to skeptical to trust anyone's cooking except my own. Hopefully when I wake up on Saturday I won't be having a "bad" day.

Thanks MZH and Tex- Well, I won't be going that route! Tex, your comparison to prednisone gave me shivers. Well, I'm not surprised, but I don't plan on going through that again. Considering the cost of the entocort I just can't discard the unused portion which is too bad. I thought maybe I'd tolerate a smaller dose everyday since the every-other day didn't work right now. My GI's nurse never gave me instructions on how to reduce the dose beyond 3mg but I'm happy that they are content to keep writing my RX. Maybe skipping a dose every second or third day would be worth a try. I'm not sure if that's really tapering or just missing a dose.

[mzh]

DebE13, I found the solution to the capsule-splitting problem; one can buy empty enteric coated gel capsules! Google it and you'll find a bunch of hits - even vegetarian. I didn't look to see about GF, DF, etc but they're probably around.

As far as messing with one's cortisol levels, Entocort hasn't messed with mine. My recent 8 AM cortisol level is only 9 and my salivary cortisol is actually too low. My bones are fine. I've been taking Entocort for 5 years, mostly at the 3 mg level, but do go higher if in a flare. 9 mg actually constipates me so I don't go that high very often!

[wonderwoman]

When I divided my Entocort capsules several years ago I used my empty l-glutamine gel capsules.

I emptied the l-glutamine powder from the capsules into water and drank it. There is absolutely no taste to the powder. Now I use the powdered form of l-glutamine rather than the capsules. I had thought that if I ever needed empty gel caps, I would check if a local drug store has them.

I was taking 1/2 an Entocort every other day and then decreased the halfs to every third day over a long period of time. I was eventually off but D came back after almost 3 months off during the summer of 2011 partially due to stress from a move. Tried going off again in Jan 2012 but had to go back on.

I am now slowly going off Entocort again after more modifications to my diet as a result of MRT testing in January and a second testing at Enterolab in May. Now I've gone Paleo without eggs. I could have reduced Entocort a month ago but we were going to be traveling for three weeks so I waited til we got home.

[tex]

DebE,

I didn't mean to imply that the budesonide side effects would be as severe as the side effects of prednisone, because they would not be -- even straight, "uncoated" budesonide will never cause side effects as severe as prednisone. I just meant that if it were taken without the enteric coated capsule, it will be more likely to cause more severe side effects, because it will be working systemically, (which is the way that prednisone works).

Sorry if I gave the wrong impression,
Tex

P. S. Using aftermarket enteric-coated capsules should work OK, by the way.

[DebE13]

Thanks MZH- that's a pretty easy solution. I'll have to check Amazon and maybe give it a try.

Tex- no worries, I didn't think the side effects would compare to the prednisone but I don't want to chance anything. Plus, given the expense and effectiveness, it doesn't seem like the best choice. As always, I value your opinion (and everyone else's too).

[mzh]

More on the enteric coated capsules. They won't be on Amazon or lots of other places either. What I saw were other products that were in enteric coated capsules. You could buy something like that and empty the capsules or order them from http://www.purecapsules.co.uk/index.php ... 1&Itemid=6. Yep, in the UK.

Some sources say the enteric coating is applied after the capsule is filled and that refilling won't work. Someone on an IBS forum said he opened his EC Pentasa just fine; it wasn't sealed

BTW, the usual sealant is food-grade shellac!

[DebE13]

Very interesting- thanks for the link, it'll save me some time on the computer. Food grade shellac, huh? I wonder what's in that?

My budesonide capsule came apart easily. I was surprised how few granules were actually in there.

[DJ]

The Entocort EC capsules are enteric coated; that's what the EC stands for. If you take some of the med out of the capsule and just swallow it, you're losing the benefit of the medication; it won't work if it's in the stomach. The capsule gets it to the intestine where it works b/c the capsule dissolves in the intestine, not in the stomach. I'm 99.99999999% that it's the capsule that's coated, not the granules.

Yes, you are correct, the enteric coating is on the capsules. If I understand her correctly, Harma simply discarded the portion that she did not want to take, and she took the rest in the capsule, so it should have worked normally for her.

If the budesonide is taken without the capsule, I'm not sure that it will be totally ineffective, however. Here is what I believe will happen:

Research shows that only up to 19% of the budesonide in Entocort EC is absorbed into the bloodstream (normally). If the budesonide is taken sans capsule, most of it will be absorbed into the bloodstream as soon as it passes into the duodenum. IOW, it will be absorbed in the same way that prednisone is absorbed and it will become active systemically. Whether it will be more or less effective for treating intestinal inflammation than it would have been if taken in the enteric-coated capsule, is open to argument. I suspect that it will be less effective, because it will be distributed to all parts of the body, rather than concentrated in the ileum and proximal colon. Therefore, like prednisone, the efficacy will be dose-dependent.

I'm just guessing, since these are pretty much uncharted waters. One thing is for sure, though. If taken without the enteric-coated capsule, budesonide will perform very similarly to prednisone, and it will almost surely cause a much higher than normal level of side effects (similar to prednisone) relative to any given dose.

Tex

Tex, I'm splitting pills into gelatin caps Should I stop doing that? Yikes!!