Hi everyone. I went to the GI today and I was so frustrated with him. When I told him that I was eliminating the food triggers from my diet he said that food intolerances have nothing to do with cc/mc. My mouth about hit the floor. He told me that he still believes that something else is going on that he can't find and that I should still go to Mayo for a second opinion. My dh and I told him that before we go to Mayo we wanted to exhaust every other option first. He told me that he has many patients with cc and that I am the only one that has not responded to any of the medications. To make a very long story short he agreed to put me on Entocort. I know that some of you have tried this and wanted to get a heads up on what to expect. I start tomorrow with 9ml a day for 3 weeks and then we will start to taper off.
The only bad thing is that I lost 10 pounds since the last time I saw him (October) and before I was not losing any weight. In fact, I actually gained a few pounds last year. Needless to say my dh was not pleased about that.
Anyway, if anyone could give me some insight as to their progress on Entocort I would really appreciate it.
Love,
Rose
PS we warmed up to 30 degrees.
Starting Entocort
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Rose, this is for your doctor
(I love raising that flag). However, he is not any different than most of the GIs who roll their eyes and say diet has nothing to do with MC. We on this forum KNOW otherwise. We've experienced it....some with diet alone and some with diet and meds. The results with Entocort here are varied. I never have taken any meds for MC other than Welchol. Going GF (I've been dairy free for years and years) worked perfectly at first but then I had problems. I suspected soy because of the other PPs experiences and it was the culprit.BTW, my GI, who gave me plenty of grief when I wanted her to write an order for the EnteroLab testing, is going to try GF for another of her patients with MC who isn't responding to Entocort. This was a doctor I wanted to fire but a new one said I was already under treatment (HA) and
wouldn't take me. (OK, maybe I was under treatment from Tex and the PP.)
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Joan,
I love that flag raising as well. I agree with you. I told my dh that I have to go with what this group says over the GI since everyone here has this crap (no pun intended). We are all experiencing this and you all have proven that eliminating these triggers work. By the end of the appointment my GI was not even looking at me and directed all of his comments to my husband. He told me that going 27 times in one day is not normal for someone with cc. I told him that at that time (last week) I was still ingesting soy and I found some hidden cross-contamination lactose in a GF cereal bar, but he still brushed that off as not the cause of my plentiful bm's. The Welchol didn't do anything for me except give me more gas (which I have enough of - thank you very much).
Anyway, thank you for your flag and words of encouragement.
Love,
Rose
I love that flag raising as well. I agree with you. I told my dh that I have to go with what this group says over the GI since everyone here has this crap (no pun intended). We are all experiencing this and you all have proven that eliminating these triggers work. By the end of the appointment my GI was not even looking at me and directed all of his comments to my husband. He told me that going 27 times in one day is not normal for someone with cc. I told him that at that time (last week) I was still ingesting soy and I found some hidden cross-contamination lactose in a GF cereal bar, but he still brushed that off as not the cause of my plentiful bm's. The Welchol didn't do anything for me except give me more gas (which I have enough of - thank you very much).
Anyway, thank you for your flag and words of encouragement.
Love,
Rose
Rose
GOOD FOR YOU. 
On a Friday, my GI gave me the choice of Entocort or Lialda with my diagnosis. I asked if I could have over the weekend to think about it. I got on the net and found the PP. By Monday, I was gluten free (GF). I did so well that I had to take prunes and prune juice to get my sample for EnteroLab!
I found out that I was ingesting one of my intolerances in my vitamins because of a terrific PP who posted.
I can't promise that you'll go into remission but we sure will help get you on the way. As you have probably read, quite a few of our family have multiple intolerances which are harder to figure out, obviously.
Trust Tex and the PP, I do. Does that sound cultish?
BTW, I think my GI should be paying me for the education I have gotten here and am sharing with her. I'll post the message from Camryn's Mommy that I copied for my GI.
On a Friday, my GI gave me the choice of Entocort or Lialda with my diagnosis. I asked if I could have over the weekend to think about it. I got on the net and found the PP. By Monday, I was gluten free (GF). I did so well that I had to take prunes and prune juice to get my sample for EnteroLab!
I found out that I was ingesting one of my intolerances in my vitamins because of a terrific PP who posted.
I can't promise that you'll go into remission but we sure will help get you on the way. As you have probably read, quite a few of our family have multiple intolerances which are harder to figure out, obviously.
Trust Tex and the PP, I do. Does that sound cultish?
BTW, I think my GI should be paying me for the education I have gotten here and am sharing with her. I'll post the message from Camryn's Mommy that I copied for my GI.
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
-
Tamaraannie
- Posts: 9
- Joined: Thu Feb 05, 2009 2:08 pm
Hi Rose,
I am taking Entocort (same dose as you) going on 3 weeks now along with Lialda and I am having really good results!!!! I actually have some form to my bm (no longer complete water) and do feel a little (i do mean little here) better. I'm scared to start the weaning off since i'm afraid it's going to revert back to the dreaded water. My GI said i'd be on the lialda for life and only take the Entocort for flares. Hope this helps.
I am taking Entocort (same dose as you) going on 3 weeks now along with Lialda and I am having really good results!!!! I actually have some form to my bm (no longer complete water) and do feel a little (i do mean little here) better. I'm scared to start the weaning off since i'm afraid it's going to revert back to the dreaded water. My GI said i'd be on the lialda for life and only take the Entocort for flares. Hope this helps.
Tamara
Camryn's Mommy's post I took to my GI
Here is a copy of Camryn's Mommy's post, that I took to my GI:
So here is one believing doctor.........I hope mine is another.Thanks everyone. She has had a really good couple of days and I think all of the Thanksgiving oops have made their way out of her system. It is just amazing though how well this gf diet works. If she accidentally eats something with gluten she gets clumps of mucus in her diarrhea. If gluten is not eaten at all, the stools are formed with no mucus. I just can't believe this isn't more widely known among the medical community. Camryn's Dr. suggested writing her up as a case study. I would do it if it meant that it would help other kids/adults that have this disease.
_________________
Mommy to Camryn - 2 1/2 years old - dx'd with LC 8/08
DISCLAIMER: I am not a doctor and don't play one on TV.
LDN July 18, 2014
Joan
LDN July 18, 2014
Joan
Hi There Rose!!!
Initially with the Entocort you should start taking 3 - 3mgs. every morning.
Some have had pretty quick results and it took me 12 days before I started going formed and only have 1 BM a day.
You may find that you bruise a little easier, while on the initial dose. I have had no adverse effects and I've been on it for 2 years. I take 2- 3mgs. and have tapered down to 1 and then gone off of it and at exactly 10 days I went into a major flare.
The inflammation that you have didn't happen overnight, and 3 weeks is not going to be enough time on the Entocort.
I don't remember how long you have been GF/DF/SF....
Love
Dee~~
Initially with the Entocort you should start taking 3 - 3mgs. every morning.
Some have had pretty quick results and it took me 12 days before I started going formed and only have 1 BM a day.
You may find that you bruise a little easier, while on the initial dose. I have had no adverse effects and I've been on it for 2 years. I take 2- 3mgs. and have tapered down to 1 and then gone off of it and at exactly 10 days I went into a major flare.
The inflammation that you have didn't happen overnight, and 3 weeks is not going to be enough time on the Entocort.
I don't remember how long you have been GF/DF/SF....
Love
Dee~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Hi Rose,
I see you've already gotten some good responses. Dee took some of these words right out of my mouth, and posted a lot of this while I was writing my response, (and I got side-tracked on something else for a while), but rather than to rework my post, I think I'll just leave it as is and you can consider this to be evidence of my total agreement with what Joan and Dee have already said.
A lot of GI docs seem to be afraid of Entocort, and they want their patients to taper off it before their gut has a chance to heal. Apparently, they don't realize that the gut must heal, before the patient will stabilize, and they don't realize that it takes a significant amount of time for the healing process to be completed. In three weeks, you will be lucky to barely be in remission, and healing will have only just begun. If you taper off it then, the D will probably return, and you'll be right back where you started. The next time he tells you about all the other patients he has, who "respond" to the meds he prescribes, ask him what percentage of them are actually in remission. Probably none, because many patients just "give up" and quit coming back, and either go somewhere else, or decide to try to live with the D, and when they stop coming back, their GI doc incorrectly assumes that they are in remission. Most are not, of course. Respond does not necessarily equal remission. In this family, "responding" is not good enough - we want remission, if we can possibly achieve it, and usually, we can.
A more realistic time frame for treatment with Entocort, if you actually want to achieve a lasting remission, is about 6 months, and then try tapering off of it. That gives your gut some time to actually heal, so that the diet can take over and maintain remission from then on. Some people find that they need a year or more on Entocort, before they can safely withdraw, without a relapse. If he tells you that Entocort is unsafe for use longer than a few weeks, then he obviously doesn't understand Entocort EC. Unlike the other corticosteroids, only 10 % of Entocort EC is absorbed into the bloodstream, so it does not pose much of a systemic threat, the way that all the other corticosteroids do. History shows that it is indeed safe for long-term use, if needed.
Lialda works for some patients, but it's much safer to simply reduce the Entocort treatment down to 3 mg per day, or every other day, and use it as a maintenance med. Actually, by that point, if you have discovered all your intolerances and cut them out of your diet, you should not need any med maintenance dose. Your doc probably considers Lialda to be safer than Entocort, for use as a maintenance treatment, but the reality is that Entocort is very safe, if you haven't had any adverse reactions to it early on. Lialda, however, is a 5-ASA med, and the most popular 5-ASA med, (Asacol), has already demonstrated a history of causing chronic pancreatitis for many patients who use it on a long-term basis. IMO, the 5-ASA meds are not safe for long-term use, because of their tendency to cause chronic inflammation of the pancreas.
As Joan pointed out, that line from your GI doc, about food intolerances having nothing to do with MC, proves beyond a shadow of a doubt, that he doesn't understand even the simplest basics about the disease. Also, we have a number of members who have experienced 20, 30, and even more BMs per day. It may not be "normal", but it certainly happens. Besides, there is no such thing as a "normal" case of MC. We are all different. Some of us even experience C, rather than D, or alternating C and D. He probably will argue that that type of behavior is not normal, either, and it probably isn't "normal", but so what? It happens.
Good luck with your treatment. Tomorrow will be the first day of your journey to get your life back.
Tex
I see you've already gotten some good responses. Dee took some of these words right out of my mouth, and posted a lot of this while I was writing my response, (and I got side-tracked on something else for a while), but rather than to rework my post, I think I'll just leave it as is and you can consider this to be evidence of my total agreement with what Joan and Dee have already said.
A lot of GI docs seem to be afraid of Entocort, and they want their patients to taper off it before their gut has a chance to heal. Apparently, they don't realize that the gut must heal, before the patient will stabilize, and they don't realize that it takes a significant amount of time for the healing process to be completed. In three weeks, you will be lucky to barely be in remission, and healing will have only just begun. If you taper off it then, the D will probably return, and you'll be right back where you started. The next time he tells you about all the other patients he has, who "respond" to the meds he prescribes, ask him what percentage of them are actually in remission. Probably none, because many patients just "give up" and quit coming back, and either go somewhere else, or decide to try to live with the D, and when they stop coming back, their GI doc incorrectly assumes that they are in remission. Most are not, of course. Respond does not necessarily equal remission. In this family, "responding" is not good enough - we want remission, if we can possibly achieve it, and usually, we can.
A more realistic time frame for treatment with Entocort, if you actually want to achieve a lasting remission, is about 6 months, and then try tapering off of it. That gives your gut some time to actually heal, so that the diet can take over and maintain remission from then on. Some people find that they need a year or more on Entocort, before they can safely withdraw, without a relapse. If he tells you that Entocort is unsafe for use longer than a few weeks, then he obviously doesn't understand Entocort EC. Unlike the other corticosteroids, only 10 % of Entocort EC is absorbed into the bloodstream, so it does not pose much of a systemic threat, the way that all the other corticosteroids do. History shows that it is indeed safe for long-term use, if needed.
Lialda works for some patients, but it's much safer to simply reduce the Entocort treatment down to 3 mg per day, or every other day, and use it as a maintenance med. Actually, by that point, if you have discovered all your intolerances and cut them out of your diet, you should not need any med maintenance dose. Your doc probably considers Lialda to be safer than Entocort, for use as a maintenance treatment, but the reality is that Entocort is very safe, if you haven't had any adverse reactions to it early on. Lialda, however, is a 5-ASA med, and the most popular 5-ASA med, (Asacol), has already demonstrated a history of causing chronic pancreatitis for many patients who use it on a long-term basis. IMO, the 5-ASA meds are not safe for long-term use, because of their tendency to cause chronic inflammation of the pancreas.
As Joan pointed out, that line from your GI doc, about food intolerances having nothing to do with MC, proves beyond a shadow of a doubt, that he doesn't understand even the simplest basics about the disease. Also, we have a number of members who have experienced 20, 30, and even more BMs per day. It may not be "normal", but it certainly happens. Besides, there is no such thing as a "normal" case of MC. We are all different. Some of us even experience C, rather than D, or alternating C and D. He probably will argue that that type of behavior is not normal, either, and it probably isn't "normal", but so what? It happens.
Good luck with your treatment. Tomorrow will be the first day of your journey to get your life back.
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.
Rose,
Most people respond to Entocort, but I think it usually takes longer than 3 weeks. I hope you respond in 3 days!
Unfortunately I never did respond to any medications including Entocort, Imuran, Welchol, Prednisone, Cholestyramine, Flagyl, Neomycin and I am sure there where more. I think the steroids helped a little but not enough to call it a success. It is definitely worth a try but really do try to talk him into a longer trial. Most drug web sites say at least 6 weeks but you may need 6 months! Who knows.
I also wanted to add that I never had any noticable adverse side effects with Entocort; it just didn't work.
Pat
Most people respond to Entocort, but I think it usually takes longer than 3 weeks. I hope you respond in 3 days!
Unfortunately I never did respond to any medications including Entocort, Imuran, Welchol, Prednisone, Cholestyramine, Flagyl, Neomycin and I am sure there where more. I think the steroids helped a little but not enough to call it a success. It is definitely worth a try but really do try to talk him into a longer trial. Most drug web sites say at least 6 weeks but you may need 6 months! Who knows.
I also wanted to add that I never had any noticable adverse side effects with Entocort; it just didn't work.
Pat
Hi Rose,
I was on 3 pills a day for about 3 months, tapered down to 2 pills for the next 9 months, and have been on 1 pill for the past 6 months. I went off of it for about a month, but was right back to having the same frequency of D that I had before my Dx. I haven't had any side effects, though some people do. You should know right away if you have a problem.
I am a big proponent of Entocort because it has allowed me to get my life back while determining my intolerances. I don't think that you should wean off of it after only 3 weeks because your gut takes much longer to heal, as Tex wrote.
Good luck and keep us posted.
Gloria
I was on 3 pills a day for about 3 months, tapered down to 2 pills for the next 9 months, and have been on 1 pill for the past 6 months. I went off of it for about a month, but was right back to having the same frequency of D that I had before my Dx. I haven't had any side effects, though some people do. You should know right away if you have a problem.
I am a big proponent of Entocort because it has allowed me to get my life back while determining my intolerances. I don't think that you should wean off of it after only 3 weeks because your gut takes much longer to heal, as Tex wrote.
Good luck and keep us posted.
Gloria
You never know what you can do until you have to do it.
-
Littlekicker
- Posts: 20
- Joined: Tue Jan 06, 2009 7:18 pm
- Location: Ohio
Hi Rose,
Sorry to hear of all your troubles; life can really bite sometimes!!!
I was diagnosed in 1/08 but was not put on the Entocort until 7/08. I was doing the 9 mg/day for 3 months. I found nearly immediate relief (not complete as I was still ingesting the allergens I later found out about). After 3 months I tapered off, 6mg/day for 2 weeks and 3mg/day for one. I was pretty good for a month then had a huge flair, even worse than before. Needless to say I'm back on the Entocort (9mg/day). I began the gf diet at Thanksgiving and boy what a huge improvement. I am now discovering other tolerances (dairy, soy) not to mention finding out in 12/08 that I am allergic to wheat, beef and chocolate. Removal of these is helping.
As far as the GI - they have not a clue. I saw mine in 12/08 and told him I was doing the gf diet and he told me that "he highly does NOT recommend this". Even after explaining how much better I was feeling he actually rolled his eyes (he did this about 3 times during our appt.) I will not be seeing him as long as he keeps prescribing the Entocort. He only sent me to the Allergist to "make me feel better". I believe he just wanted to get me out of his office!!
The PP are the nicest most informative people existing on our Earth!! I am on this sight everyday and read nearly every post although I don't post much...
Thanks all of you PP!!!
I know things will get better, hang in there!!!!
Sorry to hear of all your troubles; life can really bite sometimes!!!
I was diagnosed in 1/08 but was not put on the Entocort until 7/08. I was doing the 9 mg/day for 3 months. I found nearly immediate relief (not complete as I was still ingesting the allergens I later found out about). After 3 months I tapered off, 6mg/day for 2 weeks and 3mg/day for one. I was pretty good for a month then had a huge flair, even worse than before. Needless to say I'm back on the Entocort (9mg/day). I began the gf diet at Thanksgiving and boy what a huge improvement. I am now discovering other tolerances (dairy, soy) not to mention finding out in 12/08 that I am allergic to wheat, beef and chocolate. Removal of these is helping.
As far as the GI - they have not a clue. I saw mine in 12/08 and told him I was doing the gf diet and he told me that "he highly does NOT recommend this". Even after explaining how much better I was feeling he actually rolled his eyes (he did this about 3 times during our appt.) I will not be seeing him as long as he keeps prescribing the Entocort. He only sent me to the Allergist to "make me feel better". I believe he just wanted to get me out of his office!!
The PP are the nicest most informative people existing on our Earth!! I am on this sight everyday and read nearly every post although I don't post much...
Thanks all of you PP!!!
I know things will get better, hang in there!!!!
LOL,
Leslie
Leslie
Thank you all for your reassurance and experiences with Entocort. I will start it tomorrow since my CVS did not have any and will get a shipment in this afternoon. I agree with you all though that 3 weeks is not long enough.
As far as Asacol, I tried that last year and it did nothing, so I really hope that the Entocort works along with the GF/DF/SF diet. I can't tell you how much you all have changed my outlook on life. I am just so happy that I have found such a loving and supportive group.
Love to All,
Rose
As far as Asacol, I tried that last year and it did nothing, so I really hope that the Entocort works along with the GF/DF/SF diet. I can't tell you how much you all have changed my outlook on life. I am just so happy that I have found such a loving and supportive group.
Love to All,
Rose
Hi Rose, I too, was given asacol last fall shortly after I was diagnosed and it did nothing for me. I found this board in Dec. and have gone gf, df, soy and egg free after receiving my Enterolab reports. I started Entocort 2 weeks ago, and I can tell it's helping me. I go back to my gi this Friday (3 weeks into it) and I'll find out what his opinions are about the time frame. I'm hoping he's willing to give me a lot of time. I am prone to having side effects from drugs and I was worried about that, but I have had not side effects from the Entocort. Good luck, JoAnn
Courage is being scared to death, but saddling up anyway. John Wayne
Dee
Dee:
I was reading your post on Entocort and I have just started on it this past Tuesday, 3mg x 3 in a.m., however, I have only taken 3mg x 2 in a.m. as I was worried I would not sleep, and not knowing the side effects, (the nurse in me), I was interested in your comment about 3 weeks dosage which is what my doctor said, to take this for 3 weeks, and at that time I will see him (GI) again,
Appreciate any info, also taking Asacol 2, 2 times a day........which I think causes me nausea and sometimes vomiting, my GI says it should not but you know what ,,,,,,,,,,it does!
Thanks so much for any info
Laura
Dee:
I was reading your post on Entocort and I have just started on it this past Tuesday, 3mg x 3 in a.m., however, I have only taken 3mg x 2 in a.m. as I was worried I would not sleep, and not knowing the side effects, (the nurse in me), I was interested in your comment about 3 weeks dosage which is what my doctor said, to take this for 3 weeks, and at that time I will see him (GI) again,
Appreciate any info, also taking Asacol 2, 2 times a day........which I think causes me nausea and sometimes vomiting, my GI says it should not but you know what ,,,,,,,,,,it does!
Thanks so much for any info
Laura
LWalker
I had no problems with sleep while I was taking Entocort. I don't remember others mentioning that side effect for Entocort but that doesn't mean that they didn't. I could have forgotten.
I'm only posting this because if your dosage isn't enough, it may not be effective.
Shirley
I'm only posting this because if your dosage isn't enough, it may not be effective.
Shirley
When the eagles are silent, the parrots begin to jabber"
-- Winston Churchill
-- Winston Churchill