I've been on it, 3 a day since Sept 5, definitely tightening up, trending towards constipation, but past few days, particularly yesterday and today definitely constipated. This is a new experience--after about 10 years of D, not a lot of muscle tone left so quite difficult.
I'm wondering if it might be better to increase fiber (and what kind and how much) for a while rather than start the taper to make sure I don't reduce the dose too soon. I am relying on members of our group to advise me before I ask the doctor. Gee, I wonder why?
Thanks, Beverly
When to start taper on entocort?
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I'm on a very long, slow budesonide taper for biopsied MC-L since July 11, all approved and supervised by my GI doctor.
- 8 weeks: 3 pills per day
- 8 weeks: 2 pills per day (I'm in the 6th week of this.)
- 8 weeks: alternating 2 and 1 pill per day (I got this idea from someone on this forum and my GI doc agreed.)
- 8 weeks: 1 pill per day
- 8 weeks: 1 pill every other day
- After that, to be decided. Maybe try to get off completely or stay on a very low maintenance dose. Probably experiment more with diet without the budesonide "masking".
My bowel movements have been mostly normal (Bristol #4) for the 14 weeks so far, but there have been random oscillations toward both softer stools and constipation, plus just one episode of watery diarrhea, caused by who-knows-what. I haven't ever tried reducing budesonide just because of a day or two of constipation, because I don't think that would be a good idea, or probably even effective, plus the constipation always goes away after three days maximum and is usually followed by a softer stool.
Rather than risk a too early taper because of some temporary constipation, I make sure I drink a lot of water and occasionally take some magnesium. Thinking back over the 73 years before I got sudden, out-of-the-blue, 10-times-a-day watery diarrhea LC on April 13, 2018, I always had some occasional oscillations toward loose stools and constipation, probably depending on diet, weather, travel, exposure to microbes, and other unknown things. So, I consider these occasional stool consistency oscillations while on budesonide to be normal.
- 8 weeks: 3 pills per day
- 8 weeks: 2 pills per day (I'm in the 6th week of this.)
- 8 weeks: alternating 2 and 1 pill per day (I got this idea from someone on this forum and my GI doc agreed.)
- 8 weeks: 1 pill per day
- 8 weeks: 1 pill every other day
- After that, to be decided. Maybe try to get off completely or stay on a very low maintenance dose. Probably experiment more with diet without the budesonide "masking".
My bowel movements have been mostly normal (Bristol #4) for the 14 weeks so far, but there have been random oscillations toward both softer stools and constipation, plus just one episode of watery diarrhea, caused by who-knows-what. I haven't ever tried reducing budesonide just because of a day or two of constipation, because I don't think that would be a good idea, or probably even effective, plus the constipation always goes away after three days maximum and is usually followed by a softer stool.
Rather than risk a too early taper because of some temporary constipation, I make sure I drink a lot of water and occasionally take some magnesium. Thinking back over the 73 years before I got sudden, out-of-the-blue, 10-times-a-day watery diarrhea LC on April 13, 2018, I always had some occasional oscillations toward loose stools and constipation, probably depending on diet, weather, travel, exposure to microbes, and other unknown things. So, I consider these occasional stool consistency oscillations while on budesonide to be normal.
Kilt, we appreciate your input, but when advising another member, please don't offer advice that contradicts the advice of a member who has been dealing with this disease for many years, when your advice is based strictly on opinion without any experience to support it. If a contradiction is intended to correct an obvious mistake, that's a different matter, but that's not the case here.
Reducing the dosage of budesonide to the next level at the first signs of constipation has been shown to be generally helpful for virtually everyone here who has needed to use it, because for many MC patients, constipation is a much bigger problem than diarrhea, once it develops.
Please don't misunderstand me, it's fine to make suggestions based on your own experience, but not based on your speculation — especially when it contradicts an experienced member's opinion.
Tex
Reducing the dosage of budesonide to the next level at the first signs of constipation has been shown to be generally helpful for virtually everyone here who has needed to use it, because for many MC patients, constipation is a much bigger problem than diarrhea, once it develops.
Please don't misunderstand me, it's fine to make suggestions based on your own experience, but not based on your speculation — especially when it contradicts an experienced member's opinion.
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.
wow, I do call that a long, slow, taper. If you've read my previous posts, in January the GI I am no longer using refused to give me more than 2 a day for 1 month, then 1 a day for a month! He was concerned about osteoporosis, which I think we've covered by some of out members. That was basically a waste of money and lots of problems with side effects on the Apriso he put me on before the endocort. The new GI (my 4th) hasn't been clear about a taper, but I have a follow up Nov. 7. I doubt that she'll ok other than tapering rather than extending the med, but since I now know about All Day Chemist, if I don't agree with her I can just get pills from them. And, as I've been doing for nearly 9 years, this support group and I will map out whatever is deemed best for me.
Thanks for the response.
Beverlu
Thanks for the response.
Beverlu
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tommyboywalker
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Beverly,
I agree with the others that with you that if the constipation continues, even though it does seem early to start tapering with only being 13 days since you started, I would consider tapering to 2 Budesonide a day. Every body is different and you may only need 2 at this time to do the job. Adding fiber may aggravate your GI and it is my understanding that isn't beneficial. I would consider staying on 2 a day though for up to 6 weeks if your situation stabilizes.
You didn't mention diet in this thread; are you gluten free and dairy free? Do you have other food sensitivities as many with MC do? I think that diet along with Budesonide gives you by far the best chance for remission.
I wish you only the best moving forward and keep us updated; we're all in this together!
I agree with the others that with you that if the constipation continues, even though it does seem early to start tapering with only being 13 days since you started, I would consider tapering to 2 Budesonide a day. Every body is different and you may only need 2 at this time to do the job. Adding fiber may aggravate your GI and it is my understanding that isn't beneficial. I would consider staying on 2 a day though for up to 6 weeks if your situation stabilizes.
You didn't mention diet in this thread; are you gluten free and dairy free? Do you have other food sensitivities as many with MC do? I think that diet along with Budesonide gives you by far the best chance for remission.
I wish you only the best moving forward and keep us updated; we're all in this together!
Hi, tommyboywalker, thanks for the reply. I think you missed some days in how long I've been on entocort--it's about 43 days. But of course it looked like I can't even spell my own name, so what the heck! (I got in a hurry and put "Beverlu instead of Beverly) I hate to start tapering too soon, read that so many have taken it 2-3 months before tapering.
As for diet, I'm about everything free--gluten, dairy, soy, corn, and a whole bunch of lesser evils that I can rotate in on a limited basis. And I'm definitely concerned about irritating my GI, I've always likened too much fiber to swallowing a Brillo pad!
Beverly
As for diet, I'm about everything free--gluten, dairy, soy, corn, and a whole bunch of lesser evils that I can rotate in on a limited basis. And I'm definitely concerned about irritating my GI, I've always likened too much fiber to swallowing a Brillo pad!
Beverly
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tommyboywalker
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- Joined: Tue Jan 23, 2018 3:49 pm
Beverly,bevfromwa wrote:Hi, tommyboywalker, thanks for the reply. I think you missed some days in how long I've been on entocort--it's about 43 days. But of course it looked like I can't even spell my own name, so what the heck! (I got in a hurry and put "Beverlu instead of Beverly) I hate to start tapering too soon, read that so many have taken it 2-3 months before tapering.
As for diet, I'm about everything free--gluten, dairy, soy, corn, and a whole bunch of lesser evils that I can rotate in on a limited basis. And I'm definitely concerned about irritating my GI, I've always likened too much fiber to swallowing a Brillo pad!
Beverly
My fault, I didn't do the math properly on how long you have been on Budesonide, you said Sept. but I was thinking Oct. If you are 45 days in with a full dosage of the drug, then I would say most definitely it would be okay to start the taper down to 2 per day. Your constipation symptoms are telling you it's time. I went about 6 weeks with the full dosage so that is 42 days, about what you are at now. It was constipation that prompted me to start my taper from 3 to 2 capsules. With the advice of Tex and all of the rest of the fine folks on this forum! I am doing so well, and couldn't be happier.
And sounds like you have your diet limitations down well which is so important!
As for AllDayChemist, I do use them and have had very good luck with them as buying Budesonide from my US pharmacy is THIRTEEN times more than AllDayChemist! And that is even with good insurance! So even though my GI doctor is onboard with my extremely slow taper and the prescription is on file to accommodate this slow taper and provide enough of the drug, it's purely a matter of cost for me as to why I use AllDayChemist. I thoroughly researched AllDayChemist and have found nothing that gave me pause from placing my orders with them. 2 weeks from order date to your door; it does take a little while to clear customs. Their "E-Check" way to order is easy and secure and funds are taken directly out of your checking account.
Our politicians have to do something about ridiculous prices on drugs in this country; big pharma is completely out of control!!!! And Budesonide costs are "Exhibit A" in this ripoff.
Hi Bev,
Just like the others have said, once I started experiencing constipation and some cramping I dropped to 2 pills (6mg) per day. I stayed there until the constipation set in again then dropped to 3 mg. I did find I was reacting to eggs and Budesonide was masking that but there were no other surprises. I was able to go to 1 capsule every other day for a couple weeks, then phased it out. Rather than a schedule I went based on how I felt.
Best wishes,
Carol
Just like the others have said, once I started experiencing constipation and some cramping I dropped to 2 pills (6mg) per day. I stayed there until the constipation set in again then dropped to 3 mg. I did find I was reacting to eggs and Budesonide was masking that but there were no other surprises. I was able to go to 1 capsule every other day for a couple weeks, then phased it out. Rather than a schedule I went based on how I felt.
Best wishes,
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