Hello everyone!
I've been reading many of your posts over the last month and half as I have been dealing with my second round of LC. I was first diagnosed 10 years ago and went on Asacol, which resolved my potty problems for a while, but they have returned.
This time around, both my specialist and primary doctor have strongly encouraged Entocort. I've been very anxious about taking it. My symptoms have been mostly manageable--inconvenient but not debilitating (a 3 out of 10) and I'm otherwise very healthy, strong and active. I'm concerned that the possible side effects of Entocort might be worse than the symptoms I have been facing. My thought is that you should try the least invasive therapy first, especially if the symptoms are not debilitating; since no one really knows how to cure this thing it's most about a quality of life.
I decided to try the Pepto protocol first and I've noticed a difference--after about two weeks the explosive D went away and although I still have fussy bowels (I always have), things are much more manageable.
When I told my primary Dr. today of my efforts, she pulled up a recent study and told my that I was wasting my money on the Pepto. It was a very frustrating experience. I'm going to go back to my specialist after I've been off the Pepto for month, but I want to better understand people's experiences with Entocort first.
So, if you have or are taking Entocort, I would *very* much appreciate if you could let me know the following:
Before starting Entocort, what was the level of trouble that your UC gave you (1 begin low and 10 being high)?
Did you experience any side effects from the Entocort? What were they?
Were you able to go off the Entocort successfully? How long did you have to take a full dose and how long did you have to take a maintenance dose?
I know some of you have already answered these questions before; I greatly appreciate any information you can provide!
Rebecca
newbie--questions about Entocort
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Hi Rebecca,
I was originally diagnosed with MC and put on Asacol, which helped only a little. After a second opinion and many more tests and a second colonoscopy with a highly respected GI doc in my state, i was re-diagnosed with UC.
He first put me on Entocort and i like you were hesitant due to the side effects. It worked for the first two weeks and i had no side effects at all. However after two weeks it just stopped working. At that point he felt i needed something stronger to get my flare into remission (i had been in a flare for 7 months at that time and lost 30lbs) so he put me on Prednisone. I have to say the prednisone has worked great, and i being a lucky one has had very few side effects from it. However, i am having a problem tapering off of it. Once i get to a certain dose, my flare starts up again. At this point i am trying to find a way with my doctor to get off of the prednisone while keeping the flare at bay so i am not feeling my best.
I would say i was at an 9 (out of 10) when i first went on Entocort. I would say a lot of people have taken it here with great success and little or no side effects. It may definitely be worth it for you to try!
I was originally diagnosed with MC and put on Asacol, which helped only a little. After a second opinion and many more tests and a second colonoscopy with a highly respected GI doc in my state, i was re-diagnosed with UC.
He first put me on Entocort and i like you were hesitant due to the side effects. It worked for the first two weeks and i had no side effects at all. However after two weeks it just stopped working. At that point he felt i needed something stronger to get my flare into remission (i had been in a flare for 7 months at that time and lost 30lbs) so he put me on Prednisone. I have to say the prednisone has worked great, and i being a lucky one has had very few side effects from it. However, i am having a problem tapering off of it. Once i get to a certain dose, my flare starts up again. At this point i am trying to find a way with my doctor to get off of the prednisone while keeping the flare at bay so i am not feeling my best.
I would say i was at an 9 (out of 10) when i first went on Entocort. I would say a lot of people have taken it here with great success and little or no side effects. It may definitely be worth it for you to try!
Diagnosed with MC on 1/8/2008 after 7 months of flare. 2nd colonoscopy and new diagnosis of UC on 3/11/2008.
Hi Rebecca!
When initially being diagnosed with CC, I was prescribed Asacol and was taking 9 of them a day. It worked for a while then out of no where the D returned. On a scale of 1-10 mine was a 10 at that time. I am casein intolerant so that explained why the Asacol didn't help, as it contains dairy.
Then I started on Entocort, 3-3mgs in the mornings and within 2 weeks it controlled my symptoms. The only inital side effect was cramping in my feet and legs and easily bruising. After 6 months, I went down to 2-3mgs and have stayed on that maintenace dose. It has been 2 years now at this dose I have had no side effects.
As far as getting off the Entocort most will suffer a relaspe in their symptoms. My GI has stated that maintaining on 2 a day long term is safe.
I am gluten, casein, soy intolerant and have eliminated those 3 from my diet, also.
Dee~~~
When initially being diagnosed with CC, I was prescribed Asacol and was taking 9 of them a day. It worked for a while then out of no where the D returned. On a scale of 1-10 mine was a 10 at that time. I am casein intolerant so that explained why the Asacol didn't help, as it contains dairy.
Then I started on Entocort, 3-3mgs in the mornings and within 2 weeks it controlled my symptoms. The only inital side effect was cramping in my feet and legs and easily bruising. After 6 months, I went down to 2-3mgs and have stayed on that maintenace dose. It has been 2 years now at this dose I have had no side effects.
As far as getting off the Entocort most will suffer a relaspe in their symptoms. My GI has stated that maintaining on 2 a day long term is safe.
I am gluten, casein, soy intolerant and have eliminated those 3 from my diet, also.
Dee~~~
"What the heart gives away is never gone ... It is kept in the hearts of others."
Hi Rebecca
I would say before taking Entocort I was a 7 out of 10, it was horrid. Like a number of people in the forum I was on Predisone first for 6 weeks however, the flare started to return within 4 days once the course was completed. I have been on Entocort now since around 18th January 2008, I did have a 3 week break before seeing the GI to see if medication could be stopped. Within 2 weeks of stopping Entocort the symptoms started to return, so now I am on self medication and see the GI again in 4 months. The only side effects were during the first 2 weeks of treatment I had headaches but, those soon stopped apart from that nothing else. For most of us it is a wonder drug, with it we are able to live freely.
I would say before taking Entocort I was a 7 out of 10, it was horrid. Like a number of people in the forum I was on Predisone first for 6 weeks however, the flare started to return within 4 days once the course was completed. I have been on Entocort now since around 18th January 2008, I did have a 3 week break before seeing the GI to see if medication could be stopped. Within 2 weeks of stopping Entocort the symptoms started to return, so now I am on self medication and see the GI again in 4 months. The only side effects were during the first 2 weeks of treatment I had headaches but, those soon stopped apart from that nothing else. For most of us it is a wonder drug, with it we are able to live freely.
Hi Rebecca,
Welcome aboard. You're receiving some good responses, and since I've never taken Entocort, I don't have any personal experience with it to share, but I would like to welcome you to the group, and point out that from what I've seen over the years, among the membership here, Entocort appears to be the safest effective medication available for IBDs. It has been shown in clinical trials, (and verified by the experiences of our members), to be as effective as Prednisone, for all practical purposes, but it works without most of the Draconian side effects that Prednisone causes.
All of the same warnings are on the label, of course, (since it is a corticosteroid), but since only about 10 % of it ever gets into the bloodstream, the risk of adverse side effects actually developing, is far less than with the other corticosteroids. This is because it does not become activated until it reaches the lower third of the small intestine, and the colon, where nutrient uptake into the bloodstream is very low. Therefore, systemic action is at a very low level, which, of course, minimizes adverse side effects.
I hope you can find the answers you're seeking here. Please feel free to ask anything.
Tex
Welcome aboard. You're receiving some good responses, and since I've never taken Entocort, I don't have any personal experience with it to share, but I would like to welcome you to the group, and point out that from what I've seen over the years, among the membership here, Entocort appears to be the safest effective medication available for IBDs. It has been shown in clinical trials, (and verified by the experiences of our members), to be as effective as Prednisone, for all practical purposes, but it works without most of the Draconian side effects that Prednisone causes.
All of the same warnings are on the label, of course, (since it is a corticosteroid), but since only about 10 % of it ever gets into the bloodstream, the risk of adverse side effects actually developing, is far less than with the other corticosteroids. This is because it does not become activated until it reaches the lower third of the small intestine, and the colon, where nutrient uptake into the bloodstream is very low. Therefore, systemic action is at a very low level, which, of course, minimizes adverse side effects.
I hope you can find the answers you're seeking here. Please feel free to ask anything.
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.
