Entocort is not as effective the 2nd time around :sad:

[wonderwoman]

I am so far behind with reading and posting here that I feel I don’t know the newcomers and haven’t kept up with the longtime members. Since I haven’t posted for a while I thought I would give you an update on how I am doing.

I was diagnosed with CC in January 2010 and have been GF since March 2010. After slowly tapering down, I went off Entocort March 11, 2011. I had been on it for 7 1/2 months. I was so happy, Normans everyday like clockwork for the next almost three months so I thought I had this CC licked. Well, The end of April 2011 we decided to put our condo up for sale as we wanted to be in a house again. We sold the condo in two days and began to look for a house that would fit our needs and budget. Because of all the stress I went through, the D returned on May 30th, 2011.

I tried taking my first RX that I already had at home (Balsalazide 9 capsules a day). This didn't work so I went back on Entocort June 25th. I don’t know why I didn’t start with Entocort right away. I had a supply of Entocort on hand that I had gotten from Canada last year so it wasn’t like I had to see the doctor to get a refill. I was almost afraid to try it because I heard reports that it often doesn't work the second time around. However, it did work. I kept reducing the dosage until I was down to 1 Entocort every other day. I may have tapered off too quickly as the D returned again the end of August 2011 and I had to start over with 3 a day. Before increasing the Entocort I did try Imodium but not consistently.

By November I was down to 1 Entocort every third day when I had another flair so I again increased the Entocort to 1 every day and when that didn’t do it I went to 2 a day and also began taking Imodium on a regular basis. By the end of December I was up to 3 a day because the D kept getting worse rather than better. I have never been on 3 a day for this long so I am proof that it is not as effective the second or third time around. If I would have known last spring what I know now I never would have gone off completely. I would have continued with opening the capsules and dividing them in half or thirds. I put the contents in small empty capsules that I had.

I knowingly do not eat any gluten. I will have a little cheese occasionally. I drink rice milk, avoid soy. Currently I am not eating any raw veggies, salads, or fruit other than bananas. Our grapefruit tree and three orange trees are loaded with fruit and the fruit will need to be given away.

The Christmas holidays were not a problem for me as we are retired and have no family here. My daughter and family recently moved to Indiana. Friends are sure to cook gluten free meals when they have us over.

I am beginning to think I will need to be on Entocort for the rest of my life. I thought I had read here a long time ago that Entocort doesn’t work if you have been off of it and then later go back on. I can honesty say I believe that to be very true.

I have an appointment with my GI January 9th and I hate to see him as I am certain he will want to do another colonoscopy. I am toying with the idea of having MRT testing done.

This quote from Tex is what prompted me to write because I found it to be true in my case. I don't have Crohn's disease, but feel it applies to CC also.

Entocort has been shown in trials to be as effective as prednisone for treating Crohn's disease, but like most meds, it has about a 65% success rate at bringing remission, the first time, and a declining success rate for each subsequent treatment.

[tex]

Hi Charlotte,

Sorry to hear that your MC is active again, and so persistent. I agree that the MRT/LEAP program might be worth a try. Or, the new Panel C test at Enterolab, (which tests for sensitivity to 11 additional foods), might be helpful.

Thanks for the update, and I hope the New Year brings a return to better health.

Tex

[Gloria]

Hi Charlotte,
I'm so sorry that you're in a flare and having difficulty resolving it. It looks like you were off Entocort for about 10 weeks. We've always assumed that being off Entocort for 56-days without any problems means we've successfully achieved remission. I suspect that Entocort has a residual effect for longer than 56 days.

If I would have known last spring what I know now I never would have gone off completely.

I have said the same thing myself many times the past six months. I went off Entocort in April, but after 20 weeks had to go back on it. I believe it was the third time I had gone off of it. The only change that it makes now is to control the urgency, not the frequency nor the consistency.

I believe you have some hope, however. I was able to bring Norman back the other times I'd gone off of it by eliminating additional foods. I'm down to eating seven foods now, and eliminating any one of them will seriously reduce my calories and compromise my nutrition. You probably have more foods in your repertoire, and thus a better chance at achieving remission by eliminating some.

I agree with Tex that the MRT testing might help you to know which foods are reactive for you. You will probably be able to achieve remission with Entocort again (and without Imodium) once you eliminate additional foods.

Good luck, and let us know how you're doing.

Gloria

[JoAnn]

Hi Charlotte, I'm sorry you're having such a rough time after being in remission. It is so hard when that control you once had seems to slip away. Don't give up yet. If you did it once, I'm betting you can do it again. I also had a flare after being in remission on entocort, but unlike you, I found my second round to be more effective than the first. I had my ups and downs, but I think that is the way it is with mc. When I went into my flare after remission, my dr put me on a week of low dose prednisone and then shifted me back to entocort. I was off from it in 5 months and have managed with diet only since that time. (Gee it makes me nervous to say it out loud-I still have that fear that I will jinx it somehow )
That was 2 years ago. I think maybe a big reason I was more successful with the second round is that I had figured out most of my food sensitivities, but I didn't realize it at the time. I just stumbled along like we all have to do when we're in that stage. It was about that time that I discovered that I reacted to chicken. I couldn't believe it. It seemed like everyone on this board could eat chicken. I can eat chicken now, but it caused me severe problems at that time. I wonder if you are eating something regularly that you have become sensitive to and so are unable to get back to where you were. I would be very suspicious of dairy since you mentioned you eat cheese. You may have developed a sensitivity to it. I posted mainly to let you know that using entocort again isn't always less effective and hopefully you'll be able to reassess things and begin to improve. My thoughts and prayers are with you as you find your way through this,
Love JoAnn

[tex]

JoAnn,

You have raised a very interesting point. Perhaps Entocort is less effective in subsequent treatments because an additional food-sensitivity has begun to "mature". IOW, if Entocort seems less effective, that may be a clue that a previously insignificant food-sensitivity has reached a level where it has become a significant problem.

That theory may be all wet, but I have a hunch that we will eventually find it to be valid. Thanks for the inspiration.

Love,
Tex

[brandy]

Hi Charlotte,

I hope you do better! Thanks for posting as it helps this newbie with my tapering off of entocourt. I'm presently taking 1 every 5 days and was thinking of stopping but think I'll gradually go to 1 every 6 days for awhile then one every 7 days for awhile than maybe 1/2 every 7 days. Again thanks for your update and I hope you feel better! Brandy

[Ginny]

Charlotte, my sympathy to you! Gloria and I have been on a roller coaster that can not seem to get our MC under control. For the first time I have gone to 3 Entocort a day and it keeps the urgency down, but I can not eliminate any more foods since I have loss so much weight. I have added back buckwheat and quinoa for calories but feel nauseated a lot of the time and have excessive gas added to my problems.

I think it would be wise to the do the MRT testing it just might give you more incite. I am trying more things I have never eaten in my life; i.e. kale, millet, bok choy etc. to see if I can add ANYTHING to my diet. Also a good probiotic might help. In some testing I had done, we found that I had NO beneficial bacteria --- so how can you get well! Books such as "The Body Ecology" and "GAPS" highly recommend fermented veggies and kefir. Sounds good, but I also read that fermented veggies are prescribed as a LAXATIVE Since you have not eliminated all dairy; kefir might be a possibility for you. This all just promotes the "atmosphere" for good bacteria to be established and maintained and bring your system back into check.

JoAnn also brings us some very good points. In my case, I feel that my immune system eliminates one intolerance after another and will not stop so meds may always be necessary.

Good luck and keep us posted! Ginny

[Gloria]

Perhaps Entocort is less effective in subsequent treatments because an additional food-sensitivity has begun to "mature". IOW, if Entocort seems less effective, that may be a clue that a previously insignificant food-sensitivity has reached a level where it has become a significant problem.

I think that's exactly what happens. The difference between most others and Ginny and me is that we seem to have numerous and seemingly endless sensitivities. Once we eliminate one intolerance, our immune systems look for the next in line. Remission for me has always been very temporary.

Gloria

[Ginny]

Gloria, how true, how true

Once we eliminate one intolerance, our immune systems look for the next in line. Remission for me has always been very temporary

.

So how do we get our immune system to stop attacking??? Once in awhile I think about an immune suppressant, but I would not want to be on it permanently; at least for now.

Sorry we both are in this shape, but glad we can share our thoughts. Otherwise this would be even more depressing if we thought we were alone with this ongoing never ending illness.

Love, G

[tex]

So how do we get our immune system to stop attacking??? Once in awhile I think about an immune suppressant, but I would not want to be on it permanently; at least for now.

I have a hunch that an immune system suppressant, such as Imuran, could be used in a carefully planned out program, to bring an overactive immune system back to a more normal functioning level. This would have to be at least a medium-term treatment, due not only to the fact that it takes months to reach a level at which Imuran effectively suppresses the immune system, and homeostasis is reached, but also because it takes time for the immune system to settle back down, (it takes many months for the level of some antibodies to decay to below a threshold, above which they will trigger an adverse immune system event).

IOW, here's what I'm proposing:

1. Start taking Imuran, and continue increasing the dosage, until an optimum level is attained, (along with careful monitoring, to make sure that the drug can be safely tolerated)

2. Continue avoiding all foods that show positive results to an Enterolab test.

3. The next step is the tricky part - deciding how long is long enough. IOW, deciding when it may be safe to begin tapering off the Imuran, and hoping that the immune system is once again stable enough to function normally, as long as the previously-mentioned permanent food-sensitivities are avoided. I'm guessing that it would take at least a year, maybe two, but that's just a guess. It might take longer, and these are uncharted waters.

I'm not recommending this treatment - I'm just throwing it out as a possible option to consider.

Love,
Tex

[wonderwoman]

Thanks everyone for your words of encouragement. Someone suggested a probiotic. I started one October 16th and immediately saw a difference but that was short lived. I am still taking it.

FYI, the very first time I took Entocort was after we came back from our cruise and I had D the whole time. When I got home I went back to a very strict limited diet and still D 20-30 times a day. That's when I went on Entocort and took three capsules for only three days and then went to two a day and gradually tapered down until I was off for the 10 weeks last spring. When I had another flair during our move this summer I took two entocort a day for several weeks and got relief, went down to one a day and still OK, but when I started skipping days the D returned. I was never able to get it under control again. I was still taking my Entocort RX from Canada and was coming to the end of it so I had my GI write a new RX. I have been taking 3 Entocort a day since Dec 25 along with one Imodium and I still am not even close to normal. It does help with the urgency though. Should I take more than one Imodium?

I have to see my GI January 9th and I don't know what to tell him. I know he is going to want to do another colonoscopy and I don't want him to.

I have the name of two dieticians in the Phoenix area and will call them regarding the LEAP program. I am seriously considering that route.

[Gloria]

Charlotte,

I agree that you don't need another colonoscopy. Your best bet is to do the LEAP test because you likely have additional intolerances/irritations. Last year I wasn't improving on 9 mg Entocort a day, but once I eliminated several more foods, Norman returned and stayed until I had been off Entocort for several weeks.

Tex,
You've given an interesting proposal. I was initially very reluctant to go on Entocort. I'm even more reluctant to use Imuran, and I realize that you see it as a last resort, too. I am running out of ideas and, of course, hope.

I took Benadryl three nights this week and it eliminated the excess gas that Ginny mentioned and also reduced my bathroom trips to once per day. In addition, I didn't feel pressure to go all day - it wasn't even on my mind. That's the good news. Unfortunately, I had sharp, intermittent pains near my eye, took a two-hour nap yesterday, and didn't see any change in the consistency of my stool. I didn't take any Benadryl last night and am feeling back to normal today. I think I'll take half a pill tonight and see how I fare tomorrow.

I've also eliminated additional foods: all vegetables and avocado, but have seen no improvement as a result. It does feel like Ginny and I are at the end of the line.

Gloria

[tex]

I have to see my GI January 9th and I don't know what to tell him. I know he is going to want to do another colonoscopy and I don't want him to.

If the D is that persistent, you could probably stall a colonoscopy decision for a few weeks by requesting a series of C. diff cultures, to rule that out before proceeding. If you only have D, though, (without significant pain and/or cramps), that doesn't sound like C. diff.

How long ago was your last colonoscopy?

Tex

[tex]

It does feel like Ginny and I are at the end of the line.

That's why I mentioned that treatment theory. When we run out of options, we have to invoke another option, or we run the risk of running out of hope. And running out of hope is unthinkable, because after all, that's one of the basic concepts that makes us human. IMO, there is always hope, and as long as hope is present, it absolutely preempts the option of giving up.

Tex

[wonderwoman]

I have no pain or cramping. My last Colonoscopy was 1/22/10 with a sigmoidoscopy on 7/16/10.

I am seeing an improvement with the consistency of the stools since continuing with 3 Entocort a day and 1 Imodium.
My BM this morning at 7:30 was normal and then at 9:00 it was multiple soft fingers.

I did call the two names I have for the Leap program and want to wait a bit before proceeding there.