Hi y'all,
I took Endocort last August & thought it was wonderful. I took it for 2 months and went back to Pentasa for basic maintenance. I thought I'd try it again for travel in April. I took it for April & May and it did not work. As a matter of fact, my 'reactive' arthritis in my ankles returned. I didn't even do a gradual drop in dose, I just quit and didn't feel any different.
Is this a normal reaction?
Endocort worked first time, not second time. Is this normal?
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Endocort worked first time, not second time. Is this normal?
Bev
CC, DES exposed & Birch Pollen & related foods (no raw tree fruit)
CC, DES exposed & Birch Pollen & related foods (no raw tree fruit)
Hi Bev,
Well, it's not normal, but it's not unheard of, either, among member's experience here. Apparently some of us may build up a tolerance to certain meds, after a while, making them less effective for us. Some members have had the same type of experience with Asacol, for example.
Sorry to hear that it no longer works for you.
Tex
Well, it's not normal, but it's not unheard of, either, among member's experience here. Apparently some of us may build up a tolerance to certain meds, after a while, making them less effective for us. Some members have had the same type of experience with Asacol, for example.
Sorry to hear that it no longer works for you.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Hi Bev,
I am presently off Entocort, but had been off and on it for 3 1/2 years. About a year ago, I was down to one pill a day and went into a flare. I went on an elimination diet of chicken and rice, and got even worse. I later discovered that I was highly reactive to chicken. After my failed attempt with the elimination diet, I increased Entorcort to 9 mg. a day. I always responded quickly to an increased dosage, but not at that time.
It took three months of being on 9 mg. a day, plus dramatic changes in my diet, before normal BMs returned. I stayed on 9 mg. a day for another 8 months before I was able to reduce to 6 mg. a day.
I'm not sure if Entocort was less effective because I had become accustomed to it, or if I had become more intolerant to the foods I was eating. It's very possible that you need to eliminate additional foods from your diet along with taking Entocort. Entocort was effective for me after I eliminated the additional foods.
Gloria
I am presently off Entocort, but had been off and on it for 3 1/2 years. About a year ago, I was down to one pill a day and went into a flare. I went on an elimination diet of chicken and rice, and got even worse. I later discovered that I was highly reactive to chicken. After my failed attempt with the elimination diet, I increased Entorcort to 9 mg. a day. I always responded quickly to an increased dosage, but not at that time.
It took three months of being on 9 mg. a day, plus dramatic changes in my diet, before normal BMs returned. I stayed on 9 mg. a day for another 8 months before I was able to reduce to 6 mg. a day.
I'm not sure if Entocort was less effective because I had become accustomed to it, or if I had become more intolerant to the foods I was eating. It's very possible that you need to eliminate additional foods from your diet along with taking Entocort. Entocort was effective for me after I eliminated the additional foods.
Gloria
You never know what you can do until you have to do it.
Well, bah hum-bug! I only took it for 2 months last summer. I really was looking forward to being able to eat. Last summer, I even drank a latte with coffee ice cream in it and it didn't bother me. This time, even a small amount of peanut butter wasn't pleasant. Oh well, Pentasa works pretty well - just wish it did more for gas/bloat.
I think I need to spend more time on this website! Thanks for your feedback!
Bev
I think I need to spend more time on this website! Thanks for your feedback!
Bev
Bev
CC, DES exposed & Birch Pollen & related foods (no raw tree fruit)
CC, DES exposed & Birch Pollen & related foods (no raw tree fruit)
I do have similar experiences with entocort. In september 2009, after a flare of four months (diagnosis time), I started with entocort and had an immediate very quick response. Within hours. Since than I have been on only one pill a day, in combination with diet I was doing fine. I always thought, because of my quick response, if I would, I could eat what I want.
Since mid april I have been a bit more loose with my food and drinks, I was still gluten, soy, egg and milk free, but ate gluten free bread and cookies, houmous, different kind of candy, olives, drank mint/lemon drink. In the beginning it was, just a little D, sometimes a bit worse than others, next day fine again. Until about two weeks ago, it was brown water, a real flare. Since I can't tolerate two entocort at the same time, I thought one in morning, one in the afternoon. I really did nothing. But also it looks like my one pill that had helped my for almost two years, did not do anything. The last two weeks, some days were even worse, than it ever had been.
So, actually, I am not that convinced anymore with MC you have a choice or diet or medication (and eat anything you want). I think some of us, need both and the diet and medication.
How it works I don't know and we all seem to have different reactions to different food, but I am getting more and more the idea that diet is a much stronger and more important tool to control this disease than medication. At least for some of us.
Since mid april I have been a bit more loose with my food and drinks, I was still gluten, soy, egg and milk free, but ate gluten free bread and cookies, houmous, different kind of candy, olives, drank mint/lemon drink. In the beginning it was, just a little D, sometimes a bit worse than others, next day fine again. Until about two weeks ago, it was brown water, a real flare. Since I can't tolerate two entocort at the same time, I thought one in morning, one in the afternoon. I really did nothing. But also it looks like my one pill that had helped my for almost two years, did not do anything. The last two weeks, some days were even worse, than it ever had been.
So, actually, I am not that convinced anymore with MC you have a choice or diet or medication (and eat anything you want). I think some of us, need both and the diet and medication.
How it works I don't know and we all seem to have different reactions to different food, but I am getting more and more the idea that diet is a much stronger and more important tool to control this disease than medication. At least for some of us.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"
Hi Bev, yes it is Amman in Jordan, I would almost yes of course I have been to Petra, only 4 times already. For now I don't have plans to go for a 5th time since they almost doubled the entrance fee last november (from 35 dinar to 50 dinar, a dinar is about 1 euro). Of course it is worth every penny (or cent), but for just an extra casual visit a bit expensive. Whenever you're planning to come here and I am still here (and my plan is to stay here), I'll be more than happy to help you with any advice you need, help you out with things, consider that you have a (potty) friend friend over here.
Despite the crisis going on the arab world (Al Jazeera prefers to call it the arab awakening a term I prefer to use too), Jordan is still very quiet when it comes to protests. There is no revolution going on here (I am not sure if I have to add the word "yet"). Unfortunately tourism is doing very bad here. There are still groups coming, but there are less and less, and especially much smaller than normal. On one hand that's a pity, since nothing is going here. But on the other I can understand people are not going to book a trip to make in three or four months. I think I wouldn't do either. Best thing is, I think if people want to travel to this region, to book a last minute trip.
Despite the crisis going on the arab world (Al Jazeera prefers to call it the arab awakening a term I prefer to use too), Jordan is still very quiet when it comes to protests. There is no revolution going on here (I am not sure if I have to add the word "yet"). Unfortunately tourism is doing very bad here. There are still groups coming, but there are less and less, and especially much smaller than normal. On one hand that's a pity, since nothing is going here. But on the other I can understand people are not going to book a trip to make in three or four months. I think I wouldn't do either. Best thing is, I think if people want to travel to this region, to book a last minute trip.
"As the sense of identity shifts from the imaginary person to your real being as presence awareness, the life of suffering dissolves like mist before the rising sun"