Weaning Off Entocort

[ant]

Dear Gloria, Tex and anyone who might respond......

I am trying to decide if now should be the time I cut down from 9gm to 6gm Entocort a day, and it seems this is the best post in which to ask the question.

Here is a bit of background. I first went on Entocort (9gm per day) on 26th June this year. By about the 10th August my BMs went down from about 4 to 5 a day to 2 to 3 a day. Their consistency ranged from Normans to D. Although I had a couple of weeks of flares when it was almost all D. Since then the number of BMs has gradually gone down further to range between 1 or 2 a day. In fact in the last 10 days with one exception (when I had the D) they have been one a day. However, only about 30% of BMs or Normans or firmish. Most tend to be semi formed, soft or a bit loose. My bloating and gas have not been a problem for about three weeks. For the last 3 months my diet (with on or two slips) has been GF, DF SF and egg free. I have kept off fruit most of the time and only eaten cooked vegetables (no cabbage and no legumes). The only alcohol I have drunk is red and white wine.

My GI said to me about a month ago that if I felt my MBs had become normal I should cut back to 6gm a day, but that if my symptoms returned I should go back up to 9gm. Well, I do not know if they will ever get to "normal" (or not for a much longer time frame) but I am wondering if I should have a go at reducing my dose?

The fact that I am better but not having regular BMs on 9gm of Entocort makes me worry that 'all hell might brake loose' if I reduce the dose.

Another fact that concerns me is that the level of my Fecal Anti-tissue Transglutaminase IgA at 70 Units was high (date of EnteroLab sample was 22 July) and this could indicate that I need a long healing time.

Anyway, I would be very grateful for any points of view on this.

All best, Ant

P.S. My GI is unaware I am also treating my MC with diet.

P.P.S. I was describing MC to a friend the other day and he said
"Ah, I see, you have an overenthusiastic immune system". That is a pretty neat way of describing what is going on I thought!

[tex]

Hi Ant,

Here's my two cents worth, but, of course, Gloria has had a lot of experience with this, and I've had none, so remember that compared with her opinion, mine is certainly worth no more than two cents.

If your BMs are not even completely stable at this point, then your worries are very likely right on target - IOW, you're probably not a candidate for reducing the dose, (in fact, I doubt that you're even close). Looking at the accumulated experiences of members here, (and Gloria can address this much better than I can), it appears that only the "easiest" cases, are able to successfully cut their Entocort dose in less than about 6 months. In the more difficult cases, (I would rate your's as a more difficult case, because it took a relatively long time for Entocort to provide control, and, in fact, after 3 months, it still isn't providing complete control), it typically takes from 6 months to a year, (or more), before the dose can safely be reduced.

We're all different, though, so the old YMMV caveat, most definitely applies in a situation such as this.

I hope you can get better control, soon.
Tex

P.S. Your friend's assessment of the situation is a pretty good description, for sure.

[Gloria]

Hi Ant,

I'm not an expert, either, but I would say it's too soon for you to reduce. Your gut is still inflamed and will be for a long while. There are a couple of other members who are reducing Entocort - Hotrod and JoAnn come to mind. Hopefully they will share their experiences. We are here to learn from each other.

I believe that you will have all Normans someday, but you may need to continue to tweak your diet to determine your additional intolerances. A food diary is helpful because you can sometimes see a pattern. For example, is there a common food that you're eating on the day before you have a softer stool? What aren't you eating the day before Norman appears? Some here say that they need to look at more than 24 hours of eating. I've found that the day before works for me, especially when I only have 1 BM per day. I have gone back months in my diary to see patterns.

You can consider the problems you're having as feedback that is helping you to work toward remission. Your job now is to interpret the feedback and adjust what you're doing. Since you're already GF, DF, SF legume, fruit and egg free, you probably need to look at the vegetables that you're eating. I was surprised that I had to give up onions, sweet potatoes, carrots and red and green peppers.

Hang in there - remember that you are getting better.

Gloria

[ant]

Dear Tex and Gloria

Thanks so much for your feedback. It reinforces my own instincts, which is NOT to cut back yet. In fact today's BM just confirms the confusion - it started out as a Norman.... then next "plop" was a soft and that was followed by D.

I have been keeping a food diary ever since I went on Entocort, but have not deciphered the code yet (just finished reading Dan Brown's The Lost Symbol so "deciphering complicated codes" is on my mind).

I am sure my GI is expecting me to reduce, but I have bought some time by saying I was going on a three month's trip. As a result I got three months supply of Entocort....... two months still to go.....

All best, ant

[RUBYREDDOG]

Ant, I think you have made the right choice. I agree with Tex and Gloria. You must have some time with normans before you cut back. I went for 3 or 4 weeks of normans before I cut back to 6 mg of Entocort/day. I'm currently on 3 mg/day and don't plan on cutting back for a few more months.

As Gloria pointed out, you must monitor your feedback during the time that you are having normans. Your transition time will tell you when an offending food was consumed (theoretically). The food diary is very helpful as well. Give it some more time and I think you will have a better shot at achieving remission.

Hotrod

[Gloria]

I've posted on other threads that I'm back to having the same symptoms I had when I was Dx'd.

I've been mulling over my latest setback, trying to understand why I can get so close to remission and then suddenly relapse and have the same symptoms I had when I was Dx'd. I upped my Entocort to 9 mg. today because I'm continuing to have D every 2-3 hours. I expect that the D will begin to subside by tomorrow and then I'll begin my 6-month cycle of reducing the Entocort dosage until I flare again. In the meantime, I continue to look for the cause of each flare. My theories are as numerous as my intolerances.

I've looked over my food journal and noticed that my problems began after I ate the moldy sunflower cookie. Lest you think I'm an idiot , it didn't taste moldy, nor did the outside look moldy. I didn't see the green mold until after I bit into it and ate a piece. I don't know how long they were moldy, either. Mold is yeast, if I'm not mistaken. I wonder if I'm always just below the threshold of having a yeast problem, and something like this pushed me over it. I'm careful to not overdo eating bread with yeast, but I will sometimes eat a hamburger bun and rarely, a doughnut made from the same dough.

I've already given up fruit juices, fruit and any frozen ice cream or sherbet. I've learned to live without dessert. I will consider forsaking chocolate and also any cookies in an effort to starve the yeast, if that's the problem, but there's no guarantee that I won't have a major flare again in 6 months. In addition, I'd have to give up waffles and pancakes for breakfast, though I use only pure maple syrup. Oh, that I could eat eggs!

That might resolve what happened this time, but probably doesn't explain my other relapses. Unfortunately, it seems to take 6 months for my theories to be disproved. In the meantime, I've given up many extra foods which may or may not have contributed to my problem. Is it time to accept that I'll be taking a maintenance dose of Entocort the rest of my life?

Gloria

[Rosie]

Gloria, I feel so bad for you! It must be so discouraging to think that you've got it under control and then get a major setback. I'm relatively new here, but FWIW, if your syestem is still so sensitive, perhaps your gut hasn't healed enough yet so that any little irritant can push you over the edge.

I expect that the D will begin to subside by tomorrow and then I'll begin my 6-month cycle of reducing the Entocort dosage until I flare again.

Perhaps this is telling you that the 6 month cycle you refer to hasn't been long enough for sufficient healing to occur.......

Rosie

[ant]

Dear Gloria,

So sorry about your setback. What a roller coaster this MC is! I hope your current flare soon ends. It looks like keeping on a full dose of Entocort for longer than one would think (and much longer than most docs would say) is worth a try, IF your docs let you.

I am 4 and half months into taking the full dose of Entocort and am still flaring occasionally. (I appeared to control the last one with 2 weeks of Pepto Bismol - in addition to diet and Entocort - but I do not like using Pepto for fear neurological issues.) Now off Pepto Bismol I have 70% loose BMs with occasional D. Average MB rate one or two a day).

So, after initial progress in the first month or so with Entocort and diet (i.e. cutting BMs - often urgent D - from 7 or 8 a day to the current one or two) there is now not much additional progress.

I think there are two hopes: 1. although we experience peaks and troughs, there is still an underlying, long-term trend for the better. 2. a constant improvement in understanding the disease will eventually make treatment more effective.

All the very best as we all help each other to find a way out of this maze. Ant

[Gloria]

Rosie,

Thank you for your concern. I've been GF, SF, EF, and CF for 2 1/2 years now. I've been taking Entocort for the same amount of time and have eliminated many other foods than are listed under my Avitar. I should be healed by now, but apparently I'm not. I am telling myself that I'm fortunate that I can take Entocort and settle a flair pretty quickly. The old-timers here were not as fortunate.

Ant,

If I can live a normal life for 6 months, then have a flare for a week and get over it with Entocort, that's not such a terrible ordeal. It's disconcerting, but something I can deal with and learn to expect. I'm just an unusual case, for whatever reason. My goal has always been to wean off Entocort, as this thread indicates, but that is looking pretty unlikely. I'm fortunate that my GI will give me a prescription at any time.

I'm not sure I'll be eliminating any more foods at this point. It seems to help for a short time, and then my immune system finds something else to battle. Maybe I need to keep it busy with insignificant irritants/intolerances. Wacky reasoning, I know, but I feel like I need some closure.

Gloria

[Pat]

Gloria,

Just FYI - Maple syrup is very high in fructose. So sorry you are having this flare.

Pat

[Gloria]

An update a week later:

I'm not able to end this flare quickly this time. I seemed to be getting better for about six days, but for the past two days, I've had D six to eight times a day. Today, I'd already gone four times by noon. I've been on at least 6 mg. of Entocort for 11 days; yesterday I took 9 mg.

I have a headache, but no temperature, so I don't think it's the flu.

I didn't eat any potatoes yesterday, but it didn't make a difference yesterday or today. Today, I'm eating potatoes, but no rice. I last had probably 1/2 tsp. or less of tapioca (from the egg replacer) in my bread on Saturday.

I'm pretty much at my wit's end. I don't have many more foods to eliminate.

[Gloria]

I wrote above:

I am telling myself that I'm fortunate that I can take Entocort and settle a flair pretty quickly.

Apparently this time is different. Increasing my Entocort dosage the other times would give me relief in a matter of a few days, but it doesn't seem to be making much difference this time. I increased to 6 mg of Entocort nearly two weeks ago, with a few days of 9 mg., but I'm still having explosive, watery D several times a day. I thought I was over it yesterday, but this morning I still had the D and have had it four times today. The other times I relapsed, I was back to normal by now.

I eliminated Almond milk, potatoes and rice on three different days, but it hasn't seemed to make any difference. I think I have a bigger problem than a food intolerance, so I called my GI. I explained that I ate the moldy cookie and he's ordered a stool test to see if I have an infection. It will take 72 hours to get the results. He also told me to up the Entocort to 9 mg. a day. Now I'm nervous that I might have to go on a strong antibiotic or two if I have an infection. One step at a time, I guess.

Gloria

[tex]

Gloria,

There seems to be a tendency for the body to build up a tolerance to certain meds, including Entocort. When that happens, if a flare occurs, it takes a larger dose, or more time, or both, to bring remission. Most of the times when I've seen this happen, it occurred after someone had completely weaned off the drug, and then relapsed after a significant amount of time had passed, (often months, for example), and they've repeated this cycle several times. With each cycle, the problem becomes progressively worse. The solution seems to be to never stop taking a maintenance dose of it. By doing so, it seems to remain effective, indefinitely.

As best I am aware, though, you have never completely stopped taking it, (at least not for any significant amount of time), so that's why I feel that you're wise to be searching for some other cause. By your description, your symptoms don't seem to be severe enough to be associated with C. diff, but if I were in your shoes, I think that I would request a culture test for it, just in case, and then repeat it, if the results are negative, if the symptoms are still present, (especially if the test done today doesn't turn up any leads). Your GI doc may well be checking for C. diff, as part of the test, because as I recall, at least 72 hours are required for reliable interpretation of the culture results, but as you probably know, culture tests for C. diff are notorious for false negative results.

Good luck.

Tex

[Gloria]

Yes, this time I took one pill every other day for 55 days and then I began having problems. I never went completely off of it.

I'm submitting my stool for the test tomorrow morning. I'm not sure what kind of test he ordered - he called the hospital to place the order. I'll try to reach him if the C-diff test isn't on the order and see if he'll order the test.

Gloria

[tex]

Yes, this time I took one pill every other day for 55 days and then I began having problems.

Hmmmmmm. That magical 8-week point. You almost made it - there was only one day to go.

Tex