Leah,
I have read your advice several times about slowly tapering off Entocort.
I am on Uceris (9 mg tablet) and my GI has told me to stop it on June 1st.
Then I have an apt on the 9th so we can discuss further treatment options (maybe Humira).
What do you advise?
Leah, about Entocort and Uceris
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Leah, about Entocort and Uceris
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Hi Nerdhume,
I am wondering the reason for further treatment options? It sounds as if you are making excellent progress with the Uceris and diet modifications. I saw in another thread that you have seen improvement in your fibromyalgia and osteoarthritis. Humira may be unnecessary. I am wondering about stopping the Uceris without tapering. I don't know enough about Uceris to know if that is recommended, but it is with budenoside (Entocort). And usually the tapering needs to be longer than is recommended.
Polly
I am wondering the reason for further treatment options? It sounds as if you are making excellent progress with the Uceris and diet modifications. I saw in another thread that you have seen improvement in your fibromyalgia and osteoarthritis. Humira may be unnecessary. I am wondering about stopping the Uceris without tapering. I don't know enough about Uceris to know if that is recommended, but it is with budenoside (Entocort). And usually the tapering needs to be longer than is recommended.
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
-
robinc2525
- Adélie Penguin
- Posts: 75
- Joined: Sat Jun 08, 2013 7:29 am
Hi Nerdhume-
I was on Uceris for about 7 months last year. My doc said the same thing, no tapering. I asked Tex about it and he gave a reason why technically it is not necessary to taper Uceris the way Entocort needs to be tapered. When I went off it in November I did taper myself (a short taper, over about 3 weeks) but just because I wanted to see how I felt off it. I never really got much relief from Uceris and suspected the minimal changes I did see were from my strict diet.
This is the post where I asked about tapering Uceris and Tex's reply:
http://www.perskyfarms.com/phpBB2/viewt ... ght=uceris
I was on Uceris for about 7 months last year. My doc said the same thing, no tapering. I asked Tex about it and he gave a reason why technically it is not necessary to taper Uceris the way Entocort needs to be tapered. When I went off it in November I did taper myself (a short taper, over about 3 weeks) but just because I wanted to see how I felt off it. I never really got much relief from Uceris and suspected the minimal changes I did see were from my strict diet.
This is the post where I asked about tapering Uceris and Tex's reply:
http://www.perskyfarms.com/phpBB2/viewt ... ght=uceris
Robin, that may be why it didn't work as well for you, you might have more involved than just the colon. I have UC as well as MC. Uceris stopped my WD from the first pill I took, it was amazing.
My GI thinks 3 months is long enough to be on Uceris, he doesn't consider it a long term solution. If I stop it and I am in remission fine, if I stop it and back to WD then Humira or other options. I have already tried Lialda and it didn't help at all.
I think I understand about the tapering, guess I'll just have to see what happens June 1st.
Hoping the diet changes will help as well. The Uceris doesn't totally mask reactions, but it does keep them from going totally out of control.
My GI thinks 3 months is long enough to be on Uceris, he doesn't consider it a long term solution. If I stop it and I am in remission fine, if I stop it and back to WD then Humira or other options. I have already tried Lialda and it didn't help at all.
I think I understand about the tapering, guess I'll just have to see what happens June 1st.
Hoping the diet changes will help as well. The Uceris doesn't totally mask reactions, but it does keep them from going totally out of control.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
Hi Nerdhume,
Please read up on Humira and check out the side effects. I think it's very scary stuff and really a med of last resort. I agree with Polly-- if you are doing well now why are other options needed?. You will heal if you've eliminated inflammation causing foods and supplements. We have members that have taken budesonide in small doses (like 3 mg a day) for a couple of years. Your body absorbs so little of it, it's much less risky than Humira or another major immune suppressant.
Just a thought. I'm sure you've done your research, but surely if needed there is another option between Uceris and Humira.
Please read up on Humira and check out the side effects. I think it's very scary stuff and really a med of last resort. I agree with Polly-- if you are doing well now why are other options needed?. You will heal if you've eliminated inflammation causing foods and supplements. We have members that have taken budesonide in small doses (like 3 mg a day) for a couple of years. Your body absorbs so little of it, it's much less risky than Humira or another major immune suppressant.
Just a thought. I'm sure you've done your research, but surely if needed there is another option between Uceris and Humira.
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Here is an additional thought (strictly my own unprofessional opinion) on tapering dosages of corticosteroids rather than discontinuing the drugs cold turkey:
It's claimed by the manufacturer that since no significant amount of Uceris is absorbed into the bloodstream, there can be no potential for adrenal dependence, so therefore abruptly stopping the use of the drug at any time is medically safe. IMO, that's probably true. However, safety is not the only reason why we recommend slowly tapering the dosage of corticosteroids when they are used used for treating MC.
It appears that the primary mode of action for corticosteroids (when used to treat an IBD) is to suppress inflammation by stabilizing and suppressing mast cell numbers. IOW, they sort of achieve the same end effect as an antihistamine, but rather than to prevent histamine from attaching to histamine receptors (as an antihistamine does), corticosteroids prevent the mast cells from releasing histamine (and other pro-inflammatory agents) in the first place, by stabilizing their behavior, and by minimizing their population density.
However, when a corticosteroid treatment is abruptly terminated, mast cell numbers quickly repopulate, and it appears that they may promptly exceed their original population level, resulting in aggressive mast cell activation (degranulation, which results in the release of histamine and other pro-inflammatory mediators).
This is similar to the rebound effect that occurs when a PPI is discontinued. When a PPI is discontinued, gastric acidity (prompted by increased histamine levels) rebounds to a higher level than it was before the PPI treatment was originally initiated. That causes the symptoms of GERD to be worse than they were originally, and it literally guarantees that a PPI user will find it extremely difficult to stop using a PPI, because the symptom rebound will force them to resume using the drug.
So in order to prevent mast cell numbers from rebounding to a level at which a relapse of symptoms will result (because of the renewed inflammation caused by all the mast cell degranulation), it's prudent to very slowly taper the corticosteroid dosage (the slower the better, especially toward the end of the process), so that mast cell numbers don't have an opportunity (or a reason) to rebound to excessive levels.
At least that's the way I see it.
Nerdhume, have you ever read any of the posts written by NJ (one of our members who controls his UC by diet alone)? He hasn't posted in years, but you can read one of his posts (post number 5) in the thread at the link below, where he responds to a mother whose son was newly diagnosed with UC:
Son just diagnosed with ulcerative colitis
In the world of medicine, the use of powerful medications begets the use of even more powerful medications (when the original medications are no longer effective), until eventually, the doctors run out of options, or the patient becomes a statistic of adverse side effects risks.
By comparison, treatment by diet carries no risk of dangerous side effects.
15 years ago, I had severe arthritis symptoms, and I often had to walk with a cane. Changing my diet eliminated the arthritis, and I don't even remember where I stored that cane. I have high school classmates with similar arthritis issues. But unlike me, they follow their doctor's advice, and they take drugs. I tried to convince one of them to change her diet, about 10 years ago, but she trusted her rheumatologist (and obviously she didn't trust me), and she decided to take methotrexate. When that stopped working for her, she moved up to the anti-TNF medications. For several years now, she has been in a wheelchair, presumably on pain meds, because the drugs have lost their effectiveness for her. I haven't seen her in years, but it's probably too late for her to make diet changes now, because the damage from RA is permanent.
People don't trust treatment by diet, because their doctors tell them that it won't work, and that they need drugs to stop the inflammation. And people who have a serious disease, have been led to believe that a serious (read that risky) treatment is necessary. They think that a treatment method so simple, and so inexpensive, as diet changes, couldn't possibly be as effective as using a powerful, vastly over-priced drug. And once they get on that drug merry-go-round, they are afraid to try to jump off, because it spins faster and faster, as time goes on.
And the saddest part is that they are wrong (because their doctors are wrong). Diet is the most powerful (and by far the safest) medicine that ever existed, and it has been available to us ever since Homo sapiens first set food on terra firma on this planet. Hippocrates knew what he was talking about when he said, almost 1,600 years ago, "Let food be thy medicine and medicine be thy food".
Tex
It's claimed by the manufacturer that since no significant amount of Uceris is absorbed into the bloodstream, there can be no potential for adrenal dependence, so therefore abruptly stopping the use of the drug at any time is medically safe. IMO, that's probably true. However, safety is not the only reason why we recommend slowly tapering the dosage of corticosteroids when they are used used for treating MC.
It appears that the primary mode of action for corticosteroids (when used to treat an IBD) is to suppress inflammation by stabilizing and suppressing mast cell numbers. IOW, they sort of achieve the same end effect as an antihistamine, but rather than to prevent histamine from attaching to histamine receptors (as an antihistamine does), corticosteroids prevent the mast cells from releasing histamine (and other pro-inflammatory agents) in the first place, by stabilizing their behavior, and by minimizing their population density.
However, when a corticosteroid treatment is abruptly terminated, mast cell numbers quickly repopulate, and it appears that they may promptly exceed their original population level, resulting in aggressive mast cell activation (degranulation, which results in the release of histamine and other pro-inflammatory mediators).
This is similar to the rebound effect that occurs when a PPI is discontinued. When a PPI is discontinued, gastric acidity (prompted by increased histamine levels) rebounds to a higher level than it was before the PPI treatment was originally initiated. That causes the symptoms of GERD to be worse than they were originally, and it literally guarantees that a PPI user will find it extremely difficult to stop using a PPI, because the symptom rebound will force them to resume using the drug.
So in order to prevent mast cell numbers from rebounding to a level at which a relapse of symptoms will result (because of the renewed inflammation caused by all the mast cell degranulation), it's prudent to very slowly taper the corticosteroid dosage (the slower the better, especially toward the end of the process), so that mast cell numbers don't have an opportunity (or a reason) to rebound to excessive levels.
At least that's the way I see it.
Nerdhume, have you ever read any of the posts written by NJ (one of our members who controls his UC by diet alone)? He hasn't posted in years, but you can read one of his posts (post number 5) in the thread at the link below, where he responds to a mother whose son was newly diagnosed with UC:
Son just diagnosed with ulcerative colitis
In the world of medicine, the use of powerful medications begets the use of even more powerful medications (when the original medications are no longer effective), until eventually, the doctors run out of options, or the patient becomes a statistic of adverse side effects risks.
By comparison, treatment by diet carries no risk of dangerous side effects.
15 years ago, I had severe arthritis symptoms, and I often had to walk with a cane. Changing my diet eliminated the arthritis, and I don't even remember where I stored that cane. I have high school classmates with similar arthritis issues. But unlike me, they follow their doctor's advice, and they take drugs. I tried to convince one of them to change her diet, about 10 years ago, but she trusted her rheumatologist (and obviously she didn't trust me), and she decided to take methotrexate. When that stopped working for her, she moved up to the anti-TNF medications. For several years now, she has been in a wheelchair, presumably on pain meds, because the drugs have lost their effectiveness for her. I haven't seen her in years, but it's probably too late for her to make diet changes now, because the damage from RA is permanent.
People don't trust treatment by diet, because their doctors tell them that it won't work, and that they need drugs to stop the inflammation. And people who have a serious disease, have been led to believe that a serious (read that risky) treatment is necessary. They think that a treatment method so simple, and so inexpensive, as diet changes, couldn't possibly be as effective as using a powerful, vastly over-priced drug. And once they get on that drug merry-go-round, they are afraid to try to jump off, because it spins faster and faster, as time goes on.
And the saddest part is that they are wrong (because their doctors are wrong). Diet is the most powerful (and by far the safest) medicine that ever existed, and it has been available to us ever since Homo sapiens first set food on terra firma on this planet. Hippocrates knew what he was talking about when he said, almost 1,600 years ago, "Let food be thy medicine and medicine be thy food".
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.
Thanks, Tex, I am going to try to keep this under control with diet. I also don't see any reason to jump to a med like Humira, seems to me it would be safer to just continue with the Uceris. It hasn't been around long enough to know what may happen with long term use, but I do understand it doesn't get into the blood as much as other steroids.
My father died of a heart attack at age 42. He had very serious RA. At that time, 1960s, cortisone was considered a miracle drug. That was also before they realized the consequences to the heart. Believe me I don't necessarily believe all I am told by doctors, quite the contrary. I was diagnosed with RA in my 20s. Dr. said I would be in a wheelchair by the time I was 30 and there was really no cure, just pain meds. He told me the best treatment was NOT moving a joint if it hurt because damage would result.
I had 2 small children at the time. After a couple of weeks lying down and on pain meds I could tell that would not work for me. I had things to do and I couldn't be half asleep all the time. I got up, got moving and quit the meds. Within a year all those symptoms stopped.
I am now 62 and have osteoarthritis which seems to have stopped with the strict diet. What if I had believed the doctor 40 years ago?
Thanks for all the responses, just wanted to double check with others that have more experience with this disease.
My father died of a heart attack at age 42. He had very serious RA. At that time, 1960s, cortisone was considered a miracle drug. That was also before they realized the consequences to the heart. Believe me I don't necessarily believe all I am told by doctors, quite the contrary. I was diagnosed with RA in my 20s. Dr. said I would be in a wheelchair by the time I was 30 and there was really no cure, just pain meds. He told me the best treatment was NOT moving a joint if it hurt because damage would result.
I had 2 small children at the time. After a couple of weeks lying down and on pain meds I could tell that would not work for me. I had things to do and I couldn't be half asleep all the time. I got up, got moving and quit the meds. Within a year all those symptoms stopped.
I am now 62 and have osteoarthritis which seems to have stopped with the strict diet. What if I had believed the doctor 40 years ago?
Thanks for all the responses, just wanted to double check with others that have more experience with this disease.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
I agree with your additional thought, Tex. I was not concerned about the adrenal suppression when I mentioned tapering, but rather, the sudden stopping of any anti-inflammatory med that might cause "rebound". And we know here that those who slowly tapered budenoside seemed to do better than those who quit more abruptly. The tapering also allows more time for diet to work.
Polly
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Hi Nerdhume. Sorry it took me so long to get back to you. I had overnight guests.
It seems that you have already gotten great advice. I can tell you that I was on the full dose of Entocort for one month. I cut it by a third for the next two months. Another third for the following two months. The final month was spent taking one pill every other day, then every third day…etc. Like Tex said, this process prevents a relapse. I don't know much about Uceris, but I don't know why you can't just take less of it for a while…at least while you are still healing. It seems much less risky then Humira.
Of course this is all a very personal decision. Just remember where you have started and where you are now. Progress, yes? Healing can take a long time. Give the diet a good long time to work ( if you can)
Leah
It seems that you have already gotten great advice. I can tell you that I was on the full dose of Entocort for one month. I cut it by a third for the next two months. Another third for the following two months. The final month was spent taking one pill every other day, then every third day…etc. Like Tex said, this process prevents a relapse. I don't know much about Uceris, but I don't know why you can't just take less of it for a while…at least while you are still healing. It seems much less risky then Humira.
Of course this is all a very personal decision. Just remember where you have started and where you are now. Progress, yes? Healing can take a long time. Give the diet a good long time to work ( if you can)
Leah
Hi Nerdhume,
As the others have said, diet is the best medicine ever. I unsuccessfully tried more than a dozen medicines including Lialda for my MC and inflammatory arthritis before finding this forum, a new GI and, ultimately, Entocort and antihistamines with diet changes. My rheumatologist wanted to give me a prescription for Humira, too. She tried to give the prescription to keep at home for an emergency during "my little food experiment." I also did the long taper. The diet changes, even with Entocort, took a long time for me. I still have flares; I'm sure I still have more foods to eliminate and healing to do, but I'm very glad I stopped taking medicine. I hope you have similar success with diet. It seems that you are already! Everyone is different, and you will know what's best for you.
Kathy
As the others have said, diet is the best medicine ever. I unsuccessfully tried more than a dozen medicines including Lialda for my MC and inflammatory arthritis before finding this forum, a new GI and, ultimately, Entocort and antihistamines with diet changes. My rheumatologist wanted to give me a prescription for Humira, too. She tried to give the prescription to keep at home for an emergency during "my little food experiment." I also did the long taper. The diet changes, even with Entocort, took a long time for me. I still have flares; I'm sure I still have more foods to eliminate and healing to do, but I'm very glad I stopped taking medicine. I hope you have similar success with diet. It seems that you are already! Everyone is different, and you will know what's best for you.
Kathy
Thanks for all the good advice.
Uceris only comes in a 9mg tablet. And I don't think it can be cut because of the coating.
I can however talk to the GI about switching to Entocort, which is just a different form of the same med and comes in smaller tablets.
Uceris only comes in a 9mg tablet. And I don't think it can be cut because of the coating.
I can however talk to the GI about switching to Entocort, which is just a different form of the same med and comes in smaller tablets.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
-
robinc2525
- Adélie Penguin
- Posts: 75
- Joined: Sat Jun 08, 2013 7:29 am
Is Uceris like Lialda? I am going to Google it. They are all 5ASA's with a different delivery mechanism based on PH in the GI tract. Have been no real revelation drugs for IBD in many years, sadly. Lialda was/is very hard for me to take, as was Asacol.
"It's not what I believe. It's what I can prove." - A Few Good Men
hoosier1
Uceris is budesonide, just a different coating designed to dissolve in the colon where most of it will not be absorbed into the blood stream.
Leah, robinc2525
That would be a way to taper off, just adding more time between pills, may give that a try.
Uceris is budesonide, just a different coating designed to dissolve in the colon where most of it will not be absorbed into the blood stream.
Leah, robinc2525
That would be a way to taper off, just adding more time between pills, may give that a try.
Theresa
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn
MC and UC 2014
in remission since June 1, 2014
We must all suffer one of two things: the pain of discipline or the pain of regret. ~Jim Rohn