Hi again everyone,
I have been taking Entorcort for 9 weeks and am currently on 6mg. a day with no D. Two weeks ago I tried tapering down to 1 a day and my explosive D came back in addition to stomach pain so increased back to 2 with my GI's blessings. Today will be the 2nd day with no BM so I would say the Entorcort is definitely working. Has anyone had success tapering down to 1 with the addition of immodium? Given that it is the weekend and I have off from work next week, I figure this would be the best time to try the tapering down. My GI noted that it can take a few days to get back to baseline, hence the addition of the immodium but that I should just "stick to it" and it will get better. Has anyone else experienced this?
Entorcort successful.....
Moderators: Rosie, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Hi Cathy,
I was an Entocort user and never concurrently used immodium at the same time. I think it just never crossed my mind to do so. One thing I learned from this disease was to do all medication adjustments on weekend when ever possible so I agree with you there. I did have to step back up several times due to "mushiness."
Keep us posted on how the step down goes.
Brandy
I was an Entocort user and never concurrently used immodium at the same time. I think it just never crossed my mind to do so. One thing I learned from this disease was to do all medication adjustments on weekend when ever possible so I agree with you there. I did have to step back up several times due to "mushiness."
Keep us posted on how the step down goes.
Brandy
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CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Cathy,
Remember that the goal of the Entocort treatment is to make life more pleasant, by suppressing the symptoms long enough to allow the diet to prevent the inflammation from regenerating, which will allow the intestines to do some healing, so that when you do wean off the Entocort, the diet will be in control, so that you won't relapse. If you try to wean off too soon, all that does is to allow new inflammation to be generated, which will be a setback to the healing process.
Entocort does not promote healing, (it actually retards healing), but it helps to buy some time, by suppressing the clinical symptoms while we attempt to heal the gut by other means, (namely the diet). If you "need" Imodium, in order to allow you to reduce your Entocort dosage, then you're trying to reduce the dosage way too soon, IMO, and you're virtually guaranteed to relapse.
If you've been on the diet for less than 6 months to a year, then it's unlikely that you'll be able to successfully lower the dosage to 3mg per day, because not enough healing has taken place, at this point. If this still happens after you've been dieting, and taking Entocort for a year or more, then there's almost surely something else in your diet that needs to be avoided.
I'm not a doctor, but this is the way that it seems to work, for most of us, based on the results of hundreds of cases, that we've seen here.
Tex
Remember that the goal of the Entocort treatment is to make life more pleasant, by suppressing the symptoms long enough to allow the diet to prevent the inflammation from regenerating, which will allow the intestines to do some healing, so that when you do wean off the Entocort, the diet will be in control, so that you won't relapse. If you try to wean off too soon, all that does is to allow new inflammation to be generated, which will be a setback to the healing process.
Entocort does not promote healing, (it actually retards healing), but it helps to buy some time, by suppressing the clinical symptoms while we attempt to heal the gut by other means, (namely the diet). If you "need" Imodium, in order to allow you to reduce your Entocort dosage, then you're trying to reduce the dosage way too soon, IMO, and you're virtually guaranteed to relapse.
If you've been on the diet for less than 6 months to a year, then it's unlikely that you'll be able to successfully lower the dosage to 3mg per day, because not enough healing has taken place, at this point. If this still happens after you've been dieting, and taking Entocort for a year or more, then there's almost surely something else in your diet that needs to be avoided.
I'm not a doctor, but this is the way that it seems to work, for most of us, based on the results of hundreds of cases, that we've seen here.
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.
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CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
I decided to completely eliminate the budesonide last week, as I was off from my job. I am now on Day 7 with no D and am back to 1-2 normans a day!! Hope this continues. I am so grateful for this board and feeling some what guilty as I haven't experienced this disease for as long as most of you have!
I feel as though my diet changes over the past 4 months have significantly helped as well and will continue to be DF and GF and watch everything that I eat.
Thanks for everyones help and support!
I feel as though my diet changes over the past 4 months have significantly helped as well and will continue to be DF and GF and watch everything that I eat.
Thanks for everyones help and support!
that you'll continue to do well.-
CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Thank Tex and Gloria....I did have a bit of a setback last night. Had been feeling the burning, cramping, stomach pains, etc. yesterday and decided to take 1 pill last night. I had some cough drops yesterday and think that may have been what triggered my stomach upset. My BM was very loose this am as well (not even close to the explosive D but concerning) so I'm going to see how it goes today.
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CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Not as successful as I'd hoped....
Unfortunately, after 8 days off budesonide and normans, I am back to major D 4-5 times a day and that is taking 3mg. a day. Today is day #4. Does anyone think I should increase back up to 2 (6mg.)until I get a handle on this?
Cathy,
Your response is typical of most patients who try to discontinue the use of budesonide to soon. You may even have to go back to 9 mg per day, in order to regain remission within a reasonable amount of time. Each time you lower the dosage and fail to maintain control, it will take longer to reestablish control, and it may require a larger dose, because the body develops an increasing tolerance to budesonide each time it goes through the cycle. It may not seem obvious now, but eventually, you will reach a point at which you have been through the cycle too many times, and your body will no longer respond to budesonide.
That's why you want to be sure that you're ready to reduce the dosage, before you do so. Most GI docs don't have the vaguest idea how long it takes to actually reach the point where the drug can be discontinued without triggering a relapse. Most GI docs think it can be done in roughly 8 weeks, (and there may be a handful of patients who are able to do that), but unfortunately, the reality is, for most of us, it takes at least 6 months to a year, (or more).
You can try 6 mg - hopefully it will work. But the point is, you obviously aren't ready to discontinue the Entocort.
Good luck.
Tex
Your response is typical of most patients who try to discontinue the use of budesonide to soon. You may even have to go back to 9 mg per day, in order to regain remission within a reasonable amount of time. Each time you lower the dosage and fail to maintain control, it will take longer to reestablish control, and it may require a larger dose, because the body develops an increasing tolerance to budesonide each time it goes through the cycle. It may not seem obvious now, but eventually, you will reach a point at which you have been through the cycle too many times, and your body will no longer respond to budesonide.
That's why you want to be sure that you're ready to reduce the dosage, before you do so. Most GI docs don't have the vaguest idea how long it takes to actually reach the point where the drug can be discontinued without triggering a relapse. Most GI docs think it can be done in roughly 8 weeks, (and there may be a handful of patients who are able to do that), but unfortunately, the reality is, for most of us, it takes at least 6 months to a year, (or more).
You can try 6 mg - hopefully it will work. But the point is, you obviously aren't ready to discontinue the Entocort.
Good luck.
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.
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CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Thanks Tex. It makes sense to go back to the full dosage for a while until I get back to normans. I'm not entirely comfortable with self-prescribing however; I refuse to call my GI as she told me to start eating Gluten again and you're right, she initially had prescribed me meds for 8-9 weeks and was surprised when I had difficulty tapering down from two to one pill. She suggested that I wait longer than a day or so and that I should "suffer" through my explosive D for longer until I reach a "baseline". Thanks again for your support!
Also, how do I know I'm ready? I thought that having normans for 7 days after discontinuing that I was? Is it typical to be able to go a week and then completely flare up again?
Also, how do I know I'm ready? I thought that having normans for 7 days after discontinuing that I was? Is it typical to be able to go a week and then completely flare up again?
Cathy, I was on 9 mg Entocort for 3 months. My doctor didn't tell me to taper off it, so I just stopped at the end of the 3 months, which is how long he had told me to take it. I continued to have normans for 3 weeks, then the D came back, just as my doctor had told me it would. That's when I began researching and found the diet connection. So no, 7 days of norman after discontinuing doesn't mean you're ready to go off; I think it just means there's still some residual effect of the Entorcort hanging on.
Martha
Martha is right on target. Corticosteroids have a relatively long half-life, and it takes them a while to be depleted.Cathy wrote:Thanks Tex. It makes sense to go back to the full dosage for a while until I get back to normans. I'm not entirely comfortable with self-prescribing however; I refuse to call my GI as she told me to start eating Gluten again and you're right, she initially had prescribed me meds for 8-9 weeks and was surprised when I had difficulty tapering down from two to one pill. She suggested that I wait longer than a day or so and that I should "suffer" through my explosive D for longer until I reach a "baseline". Thanks again for your support!
Also, how do I know I'm ready? I thought that having normans for 7 days after discontinuing that I was? Is it typical to be able to go a week and then completely flare up again?
The intestines need to heal. They are physically damaged, and they won't heal in a week. Believe it or not, research proves that it takes at least several years for gluten damage to heal, in adults - kids usually heal in a year or so. Some of us never completely heal, if the damage is extensive enough. The longer we have reacted without treatment, the more damage we have accumulated.
There is no sure way to really tell when you're ready, without trying to taper the dose, but for starters, you need to have been in full remission for several months, (to allow some time for the gut to heal), before attempting to reduce the dose. Those several months can be spent using 6 mg per day, (if that's enough to maintain full control), but 3 mg only works for those of us who are extremely responsive to budesonide, unless our diet is free of all food-sensitivities, and a reasonable amount of healing has already taken place.
Most people, (especially GI docs), assume that once a patient reaches a state of remission, they are back to normal, but that's not true - the gut still needs to heal, before it can perform normally, on it's own. We each have our own healing time requirements, and it can vary from several months, to several years. During that time, remission is fragile, and has to be nurtured carefully, or it can be quickly lost.
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.
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CathyMaine
- Little Blue Penguin
- Posts: 36
- Joined: Fri Mar 30, 2012 8:06 am
Cathy,
I did stay off Entocort. I still have some in case of emergency, but with eliminating gluten, dairy, and all legumes, I do pretty well.
I wouldn't say I'm fully in remission, since I don't have dependable normans all the time, but I don't have the watery D on a regular basis, either. Sometimes my BMs are small pieces, and if I make any mistakes in what I eat, I'll have D.
I eat a spoonful of dried flaked coconut every day in addition to being gf, df, and sf. I've been gf since October 2010, and free of the others since Jan 2011.
It's not perfect, but I feel like it's doable. I really appreciate the time I had on Entocort, which allowed me to see that it is possible to be normal, and how good that was!
My GI also said diet makes no difference, although he is the one who told me that one of his patients controlled MC with coconut macaroons, which is what sent me on the internet search that found the PP.
Love.
Martha
I did stay off Entocort. I still have some in case of emergency, but with eliminating gluten, dairy, and all legumes, I do pretty well.
I wouldn't say I'm fully in remission, since I don't have dependable normans all the time, but I don't have the watery D on a regular basis, either. Sometimes my BMs are small pieces, and if I make any mistakes in what I eat, I'll have D.
I eat a spoonful of dried flaked coconut every day in addition to being gf, df, and sf. I've been gf since October 2010, and free of the others since Jan 2011.
It's not perfect, but I feel like it's doable. I really appreciate the time I had on Entocort, which allowed me to see that it is possible to be normal, and how good that was!
My GI also said diet makes no difference, although he is the one who told me that one of his patients controlled MC with coconut macaroons, which is what sent me on the internet search that found the PP.
Love.
Martha
Martha