entocort and weight loss/gain

[scrowley]

i just started on Entocort for 8 weeks ansd have gained 3lbs.
i am wondering should I expect this to continue at a linear rate or is this it?
i am fine with the 3lbs?
also do people find when they go off it, do they loose weight and how much if any?
what is the normal weight gain for this drug for MC?
I have Lymphocytic colitis.
Also, i read that this disease can disapear, have you heard of this and what % of people has this hapened to?
thanks.

[Gloria]

Hi Scrowley,

Although some people gain weight while on Entocort, most people don't. It may be you are finally digesting and absorbing the nutrients from your food, which could cause you to gain weight. Other steroids are known to cause weight gain because they are systemic, but Entocort isn't.

I've been taking it on and off for four years and I lost 34 pounds at one point, due to major dietary restrictions. I have gained some of that weight back because I added calories to my diet.

Gloria

[tex]

Entocort has also been shown to increase appetites, which can lead to weight gain, of course. Some people lose the weight after the treatment is ended, but that doesn't hold true for everyone. Everyone responds differently to meds and diets, due to personal differences in metabolism rates.

Also, i read that this disease can disapear, have you heard of this and what % of people has this hapened to?

We have a handful of members who have experienced spontaneous remission, for varying lengths of time, but only a tiny percent of members have ever experienced this phenomenon. Most of us have to maintain a treatment program at all times, or we will promptly relapse. Many GI specialists mistakenly believe that spontaneous remission is common, and they advise their patients accordingly. Apparently, they got this false information from a couple of research projects conducted over 20 years ago, where researchers claimed that most patients' symptoms resolved with or without treatment intervention, in approximately 40 months. Here are links to copies of those reports:

http://www.ncbi.nlm.nih.gov/pubmed/8995938

http://www.ncbi.nlm.nih.gov/pmc/article ... p00629.pdf

Apparently, those reports were/are bogus, because experience has shown that such high rates of spontaneous remission simply do not occur in the real world. Below is a link to a more recent research report, (published in 2006),which shows a much more believable result:

CONCLUSION: The long-term outcome of CC is benign with a resolution of diarrhea in up to 50 % of patients receiving anti-inflammatory treatment. About 30 % of patients may experience persistent diarrhea even 10 years after diagnosis. Our data confirm that CC is a chronic disorder with a variable course of symptoms during a long-term follow-up.

The red emphasis is mine, of course, but this more recent report shows that only about half of the patients who receive medical treatment can be expected to achieve remission of symptoms, so obviously those who are not treated, will not be likely to see any improvement.

http://www.ncbi.nlm.nih.gov/pubmed/16981069

We currently have 950 members, and I can recall roughly 3 or 4 who have experienced significant periods of spontaneous remission, though not necessarily permanent remission, without any form of treatment. There are a few other members, whose MC was triggered by certain medications, and in some of those cases, those individuals tend to remain in remission, so long as they totally avoid the class of drugs that initially triggered their MC. A few of those patients, however, have found that after the passage of time, their symptoms relapse, even though they faithfully avoided the drugs that caused their disease, and when that happens, after that, they have to resort to some sort of treatment program, in order to remain in remission, just like the rest of us. Trust me, MC rarely resolves on it's own.

Tex

[sarkin]

I wanted to comment, as one of those rare 'lucky' MCers who had a mysterious period of prolonged remission... when my MC came back, it came back much harder, much worse. (And as I'm sure you're already thinking... it's not easy the first time around.) When I got sick the second time, back in March, I lost a pound a day for about a week... I truly hope that's not the way you lose your 3 extra pounds!

I wish I had known years ago about the diet connection - and am so grateful to know about it now. I think I am far more sensitive to my food intolerances now, despite 'seeming' remission, and also have additional food sensitivities, which I *might* not have had, if I had known to cut all gluten from my diet (and probably dairy as well), years back.

So many people find that Entocort is a wonderful aid, and really helps to stabilize things, while you figure out the long-term dietary changes you need to make, to live with MC. Please ask any questions you need to, to help you set your course as you navigate this condition.

All my best,

Sara

[scrowley]

thanks alot for all your replies, this is very helpful to me, I am 39 and just got this thing so am trying to learn all i can and it seems the most information out there comes from those who already have it.
its really helpful.
I was wondering when you said Tex that people need to keep a treatment program going in order to stay in remission?
do you mean treatment which always includes drugs or can that be just diet?
and what is considered remission?
not having diarrhea for a week/month/year???
I find if i watch what i eat, i will not get diarrhea only maybe once a week, i have never gotten it more than twice a week if i watch what I eat but is this considered remission?
I would never have gotten it 5-20 times/day and never had abdominal pain only right before a BM.

[tex]

do you mean treatment which always includes drugs or can that be just diet?

Whatever treatment works for the individual is an acceptable form of treatment. Some of us use diet alone, some use a low dose of a medication, (such as one Entocort capsule per day, or every other day), and some of us, (the most difficult cases), use both diet and meds. Not every type of treatment works for everyone, but virtually everyone can fine tune a treatment program that will work for them to achieve and maintain remission. Unfortunately, though, a tiny fraction of less than 1 percent of MC patients never seem to be able to discover a treatment program that will resolve all their symptoms, no matter what they try. Some people find themselves in that situation because they need to take a certain med for another condition, and that drug causes their MC symptoms.

and what is considered remission?

A return to whatever pattern of bowel habits was considered to be "normal" before the MC symptoms originally began, and the resolution of any other symptoms that were part of the syndrome, including the fatigue and brain fog, if they were part of the reaction pattern.

not having diarrhea for a week/month/year???

Even people who don't have MC get diarrhea, once in a while, and so we are subject to the same pattern, of course. If we catch a virus, or eat something that causes enteritis, we'll get diarrhea, just like anyone else. However, the only time that we will experience a relapse of our MC, is if/when we slip up on our diet, or we forget to take our meds. For those using diet for control, eating out presents the biggest risk, of course.

I find if i watch what i eat, i will not get diarrhea only maybe once a week, i have never gotten it more than twice a week if i watch what I eat but is this considered remission?

No. IMO, that's considered a flare - your gut never gets a chance to heal, if you're reacting on a weekly, or even a monthly basis. It takes many months for the gut to heal.

Everyone's reaction pattern is different. Some have D only a few times a day, while some have a frequency of as much as 50 times per day, or more. Some have alternating diarrhea, (D), and constipation, (C), (including me - I would have D for a few days to a week, and then C for a week, then it would start over, and the cycle went on indefinitely). Some people with MC never have D. We have a few members with normal BMs, and a few who have only C. Some have severe pain, and waves of cramps that may almost bring them to their knees, (I was one of them), while others never have pain as part of their reaction.

Remission is a state that matches one's overall condition before the MC symptoms originally started.

Tex