I went from Entocort 3 mg to 2 mg on December 2 by making my own capsules.
I'm VERY sensitive to reduction in Entocort. When going from 9 mg to 6 and from 6 mg to 3, I had morning head and body aches, decreased food tolerance, and lower mood. With each reduction I was able to stabilize in about two weeks. On one occasion while on 3 mg, I made a mistake and took the pill at 8:30 am instead of my later usual time of 6 pm. As a result, I held off on my next dose until the next day at 7 am and just kept that schedule. The short story is that I had withdrawal symptoms - a little bowel crankiness, head and body pain, funky mood - from just that small change.
The 3 mg to 2 mg reduction has brought about my usual withdrawal symptoms. The body pain seems less severe than with the previous reductions and it's too soon to tell if the gut change will be less severe. I'm back to lots of meat and BMs that are less formed. As mentioned, with past reductions, my gut stabilized in about two weeks.
I made my 2 mg pills by buying empty capsules and dividing the content of two pills into 3 capsules. I have seen pill filling containers on line and in the health food store but I didn't buy one. Between my husband's hands and mine, we can do two pills to three. The gel capsules are clear so it's fairly easy for a steady hand to fill each one to the same level.
I understand that some people take 3 mg of Entocort every other day. Based on my history of ugly withdrawal, I don't think I could tolerate that well.
My Entocort history is 9 mg for two months, 6 mg for two months, and 3 mg for two months. I plan to take 2 mg for one month then move to 1.5 mg. I am hoping to go off by the end of February or March. That would be 9 to 10 months.
I will share again that I have had lots of GI symptoms for most of my life and I have reason to believe that my entire digestive system looks about the same as my large intestine. My current thinking is that removing Entocort very slowly might help me to gain a good remission.
Entocort 3 mg to 2 mg in Home Grown Capsule Form
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
That sounds like a good plan.
And any symptoms that do not fit their personal perception of MC are due to "IBS", doncha know. 
I totally agree that the slower one weans off budesonide, the lower the chances of a relapse. Allowing the mast cells to repopulate the intestines very slowly is vital to preventing inappropriate degranulation that results in inflammation, IMO.
Tex
I believe that your observations are right on target. It seems baffling to me that most GI docs continue to believe that celiac disease is a disease that's limited to the small intestine, and MC is limited to the large intestine, despite all the evidence to the contrary. For one thing, there are reams of research data based on the analysis of intestinal biopsy samples that prove that both the large and small intestines are affected (inflamed) by both diseases, and for another thing, the malabsorption issues that accompany all IBDs, can only occur in the small intestine (since the colon can not absorb nutrients — only water and electrolytes). But of course many doctors get around the malabsorption issues with MC by simply falsely claiming that they are not associated with MC.DJ wrote:I will share again that I have had lots of GI symptoms for most of my life and I have reason to believe that my entire digestive system looks about the same as my large intestine. My current thinking is that removing Entocort very slowly might help me to gain a good remission.
And any symptoms that do not fit their personal perception of MC are due to "IBS", doncha know. I totally agree that the slower one weans off budesonide, the lower the chances of a relapse. Allowing the mast cells to repopulate the intestines very slowly is vital to preventing inappropriate degranulation that results in inflammation, IMO.
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.
I'll keep you posted, Gloria and Sunny. I'm happy to hear that you agree, Tex. You've been at this a long time and your thoughts on this are immensely helpful to me. There is so much to learn and change. The pieces are still coming together and putting the pieces together would take so much longer without the guidance and stories of others.
For example, early on in my introduction to this group someone asked if Entocort makes any of us cranky. Hmmm, good question
It didn't seem to apply to me at the time but when I reduce I have cranky feelings that come and go for a period of time. It's easier to cope with the crankiness knowing that there are others like me and that it will pass.
The conversation about soy intolerance and other legumes was helpful to me also. Bread made with chickpea flour is great but conversations helped me to understand that certain little episodes of intestinal backstepping were related to chickpeas and that it's likely more than just a fiber issue.
The many conversations about reducing Entocort helped me to become inventive in working out multiple problems related to reduction.
1. I would like to get off of Entocort.
2. My intestinal stability is delicate and is more delicate when I reduce Entocort.
3. I feel less well (but it's not terrible) during the first two weeks of reduction.
4. I would like to reduce Entocort very slowly.
5. Some people reduce from 3 mg to 3 mg every other day but I am so sensitive to reduction that I would feel ill with the every other day regimen.
The outcome is that I made my own lower dose pills. I would have never come to this outcome alone. I don't think my solution is necessary for everyone but it works for me.
Thank you to everyone who posts for being a resource for me and for so many others
For example, early on in my introduction to this group someone asked if Entocort makes any of us cranky. Hmmm, good question
It didn't seem to apply to me at the time but when I reduce I have cranky feelings that come and go for a period of time. It's easier to cope with the crankiness knowing that there are others like me and that it will pass. The conversation about soy intolerance and other legumes was helpful to me also. Bread made with chickpea flour is great but conversations helped me to understand that certain little episodes of intestinal backstepping were related to chickpeas and that it's likely more than just a fiber issue.
The many conversations about reducing Entocort helped me to become inventive in working out multiple problems related to reduction.
1. I would like to get off of Entocort.
2. My intestinal stability is delicate and is more delicate when I reduce Entocort.
3. I feel less well (but it's not terrible) during the first two weeks of reduction.
4. I would like to reduce Entocort very slowly.
5. Some people reduce from 3 mg to 3 mg every other day but I am so sensitive to reduction that I would feel ill with the every other day regimen.
The outcome is that I made my own lower dose pills. I would have never come to this outcome alone. I don't think my solution is necessary for everyone but it works for me.
Thank you to everyone who posts for being a resource for me and for so many others
I'm curious about the method you used to transfer the granules from one capsule to another. Did you simply split open the prescription capsule and pour an estimated 2/3 of the contents into the new capsule? If so, did you have a problem with spillage?
Gloria
Gloria
You never know what you can do until you have to do it.
Gloria wrote:I'm curious about the method you used to transfer the granules from one capsule to another. Did you simply split open the prescription capsule and pour an estimated 2/3 of the contents into the new capsule? If so, did you have a problem with spillage?
Gloria
Hi Gloria, I wasted one pill in the learning process. I lost some of the contents to spillage.
The gelatin capsules I bought are size #0. They are larger than the Entocort capsules. To get 2 mg capsules I split open the Entocort capsules one at a time and poured the content of 2 Entocort into 3 clear gelatin capsules. After trying a few other methods, my husband held three open capsules lined up together pinched between his fingers while I filled them. If they were not quite evenly filled, we carefully poured from one to the other until the three new capsules were even in content. It certainly would not be a great method of mass production but with using only one pill per day, it's not bad. I have seen capsule filling containers on line and in my health food store for about $18.
It would be easier to make 1.5 mg capsules because it requires fewer hands and less pouring and evening off of contents. In my case, it's well worth the effort. I'm far too sensitive to Entocort to proceed to every other day.
The empty gelatin capsules are very inexpensive. I bought a bag of 250 by mail for $3.99. They are also sold in bulk at my health food store. Fifty would cost about $1.50. Don't be frightened away by a bulk price of of over $100 per pound. You could probably fill a truck with a pound.
My opinion is that a person with tremors -even minor ones- would need help with the fine motor requirement of filling the capsules.
Ouch!
This is a rather painful morning. I'm trying to stay away from extra medication but I finally gave in and took Tylenol. My head and my upper body sting and hurt. I get this way during reduction of Entocort and then it passes. I have problems with a bad neck that bring on a similar feeling but Entocort masks that problem to a degree most of the time. I hope this is just a temporary withdrawal symptom and I get to keep the benefit of reduced pain that came with Entocort.
Hold Off On This!!!
If anyone is interested in trying this, please hold off until some questions are answered. Dividing capsules may require the purchase of enteric capsules!!!
That shouldn't be necessary, according to the technical literature offered by AstraZeneca (since the capsules themselves are not mentioned as a necessary part of the mechanism of action). Scroll down to item 12.1 (Clinical Pharmacology, Mechanism of Action, on page 4), and you will see that it is the individual granules that contain a protective enteric coating.
http://www1.astrazeneca-us.com/pi/entocortec.pdf
Tex
http://www1.astrazeneca-us.com/pi/entocortec.pdf
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.
Excellent! I went to work today and learned the same from a pharmacist. I drove back home to post that all is well.tex wrote:That shouldn't be necessary, according to the technical literature offered by AstraZeneca (since the capsules themselves are not mentioned as a necessary part of the mechanism of action). Scroll down to item 12.1 (Clinical Pharmacology, Mechanism of Action, on page 4), and you will see that it is the individual granules that contain a protective enteric coating.
http://www1.astrazeneca-us.com/pi/entocortec.pdf
Tex
Thanks for looking this up.
