Hi all,
I'm tapering off Entocort now. I was on 1 pill a day for over a month and waiting for my next Dr. visit. I noticed toward the end of time that I wasn't going every day and then I didn't go at all. I finally went little "nuggets" , after about 4 days of not going, that were very hard to push out. I had pain and discomfort from not going. I saw the Dr. and he gave me a tapering plan, each phase lasting 2 weeks until I see him again in 6 weeks. He didn't address the constipation that the Entocort had caused. I was so uncomfortable and knew not to take laxatives so I gave myself an enema. It helped a little. This past Friday, one week after the constipation started, I had a wedding to go to. I did all right food wise but developed a crippling, very sharp pain on my left side, that I had to leave the reception. (Despite the pain, I had a wonderful time at the wedding.) I had 2 big BM's that were norman's yesterday that helped the pain subside somewhat but it's not as painful, just makes itself known, it's there. There was no BM today. So what the heck was that all about? What's going on now?
I am not following the Dr.'s tapering plan, I am taking 1 pill every other day and if I continue to be on the constipated side, I am going to go down to 1 pill every 2 days or something like that. What do you think? I am eating very soft veggies, carrots and beans, on a daily basis. I don't want to add too much fiber too soon.
As always, I really appreciate your help and advice.
Susanne
tapering off Entocort and there's problems
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
HI Susanne, I had very similar experiences that you are describing. First off I think you are doing the right thing widening your days in between Entocort dosages. My tapering was every other day for about 10 days then I stopped completely but I really felt I was done with Entocort. Like you I was getting cramping and 'nuggets'.
I took stool softeners and found that the ducosate sodium worked better for me than the magnesium based ones. Also, my GI doc gave me a regimen for adding fiber and cautioned me that it was going to be much less than the manufacturer's recommended dose. She said that if stools are hard this will help it absorb water. If they are too soft it will give them bulk. The regimen started with 1 stool softener and 1/2 teaspoon of fiber for 1 week (I used Citrucel and had no gas or other problems). If that didn't get you the results you wanted then go up to 1 teaspoon of fiber for a week. After that you keep going up in increments: 1 1/2 teaspoon of fiber with 1-2 softeners; then 2 softeners with 2 teaspoons, 3 softeners with 3 teaspoon, etc.
My ideal dosage turned out to be one teaspoon of fiber. 1 1/2 was too much for me. Once I started eating some fruit I was able to back off of the softeners and kept up with the fiber. Eventually I stopped with the softeners completely and continued with the fiber. I've had weeks when I didn't even need the fiber but if I get C I go back to 1 teaspoon of Citrucel. I've had to back way off of eating fruit because I was also having motility issues and needed to know if fruit contributed. It helped and now if I eat fruit it's only a couple times a week.
I suspect once you are completely off the Entocort and you continue to heal you'll gain better consistency. I initially cringed at my GI docs recommendation of fiber but once she explained it (and she has never steered me wrong), it has proved to be valuable for me and my C prominence.
I hope this helps.
Carol
I took stool softeners and found that the ducosate sodium worked better for me than the magnesium based ones. Also, my GI doc gave me a regimen for adding fiber and cautioned me that it was going to be much less than the manufacturer's recommended dose. She said that if stools are hard this will help it absorb water. If they are too soft it will give them bulk. The regimen started with 1 stool softener and 1/2 teaspoon of fiber for 1 week (I used Citrucel and had no gas or other problems). If that didn't get you the results you wanted then go up to 1 teaspoon of fiber for a week. After that you keep going up in increments: 1 1/2 teaspoon of fiber with 1-2 softeners; then 2 softeners with 2 teaspoons, 3 softeners with 3 teaspoon, etc.
My ideal dosage turned out to be one teaspoon of fiber. 1 1/2 was too much for me. Once I started eating some fruit I was able to back off of the softeners and kept up with the fiber. Eventually I stopped with the softeners completely and continued with the fiber. I've had weeks when I didn't even need the fiber but if I get C I go back to 1 teaspoon of Citrucel. I've had to back way off of eating fruit because I was also having motility issues and needed to know if fruit contributed. It helped and now if I eat fruit it's only a couple times a week.
I suspect once you are completely off the Entocort and you continue to heal you'll gain better consistency. I initially cringed at my GI docs recommendation of fiber but once she explained it (and she has never steered me wrong), it has proved to be valuable for me and my C prominence.
I hope this helps.
Carol
“.... people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” Maya Angelou
Hi Susanne,
I can't add anything to what Carol suggested. I just wanted to say that I agree with the plan to reduce the Entocort and add some fiber, if necessary. As Carol pointed out, it's a balancing act.
Good luck with your program.
Tex
I can't add anything to what Carol suggested. I just wanted to say that I agree with the plan to reduce the Entocort and add some fiber, if necessary. As Carol pointed out, it's a balancing act.
Good luck with your program.
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 Carol and Tex,
Thank you. I knew that you would have some suggestions. I have Colace for a stool softener and I do have Citrucel. I have tried Citrucel in the past but will start off with a smaller dose at first and see what happens. The last time I took Citrucel I took a full tablespoon with a glass of water and I thought that i was going to die, I was so bloated and so uncomfortable.
I am having similar sharp pains in my left side again tonight but not as severe as the other night, still no bm today. Hopefully things will be better tomorrow.
Thanks, I'll post again.
Susanne
Thank you. I knew that you would have some suggestions. I have Colace for a stool softener and I do have Citrucel. I have tried Citrucel in the past but will start off with a smaller dose at first and see what happens. The last time I took Citrucel I took a full tablespoon with a glass of water and I thought that i was going to die, I was so bloated and so uncomfortable.
I am having similar sharp pains in my left side again tonight but not as severe as the other night, still no bm today. Hopefully things will be better tomorrow.
Thanks, I'll post again.
Susanne
Do most people tapering off entocort experience C an indicator that its time? I've experienced C-like cramping but always with D. Could it be a waste of time to taper if Normans aren't achieved?
Deb
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
"Do not follow where the path may lead. Go instead, where there is no path, and leave a trail.
-Ralph Waldo Emerson
2007 CC
2013 thyroid cancer- total thyroidectomy
2013 Hashimoto's - numbers always "normal"
2017 Lyme's Disease
Hi all,
I am at the other end of the spectrum now, the D has returned. I still have that pain on my left side, waist high, it is not severe but makes itself known.
I'm going to go back on 1 Entocort a day to see if the D goes away and hopefully the constipation doesn't return. I feel terrible. I guess that I didn't watch carefully enough at the wedding. The two weeks prior I had two bridal showers and I guess I goofed up there as well. I didn't eat a lot and picked the least offensive food.
It's back to the drawing board again.
Susanne
I am at the other end of the spectrum now, the D has returned. I still have that pain on my left side, waist high, it is not severe but makes itself known.
I'm going to go back on 1 Entocort a day to see if the D goes away and hopefully the constipation doesn't return. I feel terrible. I guess that I didn't watch carefully enough at the wedding. The two weeks prior I had two bridal showers and I guess I goofed up there as well. I didn't eat a lot and picked the least offensive food.
It's back to the drawing board again.
Susanne
Sorry to hear what's happening. You're probably correct that diet issues are the cause of your symptoms, and the discontinuation of Entocort allowed the reaction. If that's the case, 1 Entocort capsule per day may not be enough. Many members who have been in that situation (experiencing a relapse of symptoms) have found it necessary to use either 2 or 3 capsules of Entocort in order to regain control relatively quickly.Susanne wrote:I am at the other end of the spectrum now, the D has returned. I still have that pain on my left side, waist high, it is not severe but makes itself known.
Pain in the sigmoid colon is often associated with MC, but it can also be caused by diverticulitis. Interestingly, the pattern of inflammation that's typical of diverticulitis is virtually the same as the pattern of inflammation that's a marker of LC.
Good luck with this.
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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MaggieRedwings
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Hi all,
The 1 x a day Entocort isn't doing it, so I will up it to 2 per day for a while and then try to taper down again.
I know that I am allergic to eggs. I was told that in my 20's and Enterolab confirmed that 30+ years later. The question that I have now is chicken safe for those of us who are allergic to eggs? I eat chicken everyday at lunch and then sometimes at dinner.
I'm going to take a better look at everything I eat. I thought that I was doing pretty good. This is so depressing. I can't even make out a shopping list because I don't know what to have anymore.
Thank you for all your advice and comments.
Susanne
The 1 x a day Entocort isn't doing it, so I will up it to 2 per day for a while and then try to taper down again.
I know that I am allergic to eggs. I was told that in my 20's and Enterolab confirmed that 30+ years later. The question that I have now is chicken safe for those of us who are allergic to eggs? I eat chicken everyday at lunch and then sometimes at dinner.
I'm going to take a better look at everything I eat. I thought that I was doing pretty good. This is so depressing. I can't even make out a shopping list because I don't know what to have anymore.
Thank you for all your advice and comments.
Susanne
Hi Susanne,
I notice that you have double DQ2 genes, so it's certainly possible that you may be sensitive to chicken. If you can justify the expense, EnteroLab's Panel C test would either confirm that, or rule it out.
Tex
I notice that you have double DQ2 genes, so it's certainly possible that you may be sensitive to chicken. If you can justify the expense, EnteroLab's Panel C test would either confirm that, or rule it out.
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 all,
I have eliminated chicken and will see what happens. Tex, can I have Panel C done when I am on Entocort? I didn't have this problem the last time I tapered off Entocort. However, last time it was Entocort, this time it is the generic, is it possible that the generic form is causing my problems? I'm back on 2 pills a day and already no bm today, however, the intestines are very active and noisey.
Thanks,
Susanne
I have eliminated chicken and will see what happens. Tex, can I have Panel C done when I am on Entocort? I didn't have this problem the last time I tapered off Entocort. However, last time it was Entocort, this time it is the generic, is it possible that the generic form is causing my problems? I'm back on 2 pills a day and already no bm today, however, the intestines are very active and noisey.
Thanks,
Susanne
Hi Susanne,
Unless you have been using budesonide continuously for the past 5 or 6 months (IOW long enough to suppress your immune system), it shouldn't affect your EnteroLab test results.
There are at least two official generic versions of Entocort available in this country. One is manufactured by Mylan, Inc.,and it has different inactive ingredients than the brand name product (Entocort EC). I've forgotten the name of the other, but it is actually manufactured by AstraZeneca, and it's identical in every way to Entocort EC, except for the packaging. It even has the same name imprint on each capsule, as original Entocort EC.
There may even be a third brand available by now, for all I know, but the point is that while the active ingredients are the same for all of them, the inactive ingredients are different for any not made by AstraZeneca, and you may be sensitive to one or more of the ingredients in those brands.
In general, each successive time that we stop and then restart taking budesonide, it becomes less effective for us, until eventually, in some cases, it will reach the point at which it will provide no benefits at all.
Tex
Unless you have been using budesonide continuously for the past 5 or 6 months (IOW long enough to suppress your immune system), it shouldn't affect your EnteroLab test results.
There are at least two official generic versions of Entocort available in this country. One is manufactured by Mylan, Inc.,and it has different inactive ingredients than the brand name product (Entocort EC). I've forgotten the name of the other, but it is actually manufactured by AstraZeneca, and it's identical in every way to Entocort EC, except for the packaging. It even has the same name imprint on each capsule, as original Entocort EC.
There may even be a third brand available by now, for all I know, but the point is that while the active ingredients are the same for all of them, the inactive ingredients are different for any not made by AstraZeneca, and you may be sensitive to one or more of the ingredients in those brands.
In general, each successive time that we stop and then restart taking budesonide, it becomes less effective for us, until eventually, in some cases, it will reach the point at which it will provide no benefits at all.
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 Tex,
Thanks for the information. I have been on budesonide, Mylan, Inc. brand since May, not sure exactly I have to look it up, so that would be 3 months. I cut the chicken out of my diet and let's see what happens this week. I'm finally back to normans, I just hope that I don't get so constipated again.
Susanne
Thanks for the information. I have been on budesonide, Mylan, Inc. brand since May, not sure exactly I have to look it up, so that would be 3 months. I cut the chicken out of my diet and let's see what happens this week. I'm finally back to normans, I just hope that I don't get so constipated again.
Susanne