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My Rx says take 3 capsules by mouth daily. Somehow I looked at this and took one pill three times a day following my meal schedule. Dah??? yes retired nurses can be stupid too! I was wondering if thats why i was having trouble sleeping? I attribute my stupidity to stress and my moms recent death.
But the med is workin. :))))
Buudesonide and stupidity but it is working
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The recommendation of the Pharmacist when I first took Entocort at 9mg/day was to take the entire dose at one time. And of prime importance was to take it at the SAME time every day. They preferred taking this medication first thing in the morning.
The Entocort capsule is designed so that the active ingredient is not released into your GI tract until it reaches the area of the small intestine known as the Cecum, so it is helpful to just give it an unimpeded head start to reach it’s goal area.
PLUS ... If it is taken first thing in the morning it is :
1. easier to keep on a dependable time schedule
2. easier for you to keep track of exactly what/when you are taking this medication
3. will be easier to keep track of what you are doing once you get to the point of reducing the dose
My habit was to keep a small day calendar right alongside of the medication container and mark time and amount each day so that I can look back and see progress or lack thereof. Many of us here get to a point of taking this mediation at a low dose every other day, so if you have established this kind of routine for taking this medication, it will be much easier to keep track, and your compliance much better.
Gayle
The Entocort capsule is designed so that the active ingredient is not released into your GI tract until it reaches the area of the small intestine known as the Cecum, so it is helpful to just give it an unimpeded head start to reach it’s goal area.
PLUS ... If it is taken first thing in the morning it is :
1. easier to keep on a dependable time schedule
2. easier for you to keep track of exactly what/when you are taking this medication
3. will be easier to keep track of what you are doing once you get to the point of reducing the dose
My habit was to keep a small day calendar right alongside of the medication container and mark time and amount each day so that I can look back and see progress or lack thereof. Many of us here get to a point of taking this mediation at a low dose every other day, so if you have established this kind of routine for taking this medication, it will be much easier to keep track, and your compliance much better.
Gayle
Hmm, I took mine three different times a day for years.. My GI doc said I could take them any way I wanted to.. that all at once worked for some folks and was more convenient and others took them separately.. Since we absorb so little of it.. I figured spreading them out kept a constant flow of the stuff in my system by separating them out.
Then again so many GI docs treat entocort as a one time, one month "cure". Which is not the case...
grannyh
Then again so many GI docs treat entocort as a one time, one month "cure". Which is not the case...
grannyh
Hi gh,
But personally, I will always allow the Pharmacist the last word on the preferable way to take a medication. They either know, or will look it up, to see what is suggested ... according to the drug profile.
While it is possible to take things different ways, it seems to me to be best policy to try to take a medication for it's optimal effect. So here is where a Doc may say you can do whatever, but a Pharmacist will tell you what is actually recommended (if there is a recommendation).
Cheers,
Gayle
I believe that is what your Doc told you. No question there.My GI doc said I could take them any way I wanted to
But personally, I will always allow the Pharmacist the last word on the preferable way to take a medication. They either know, or will look it up, to see what is suggested ... according to the drug profile.
While it is possible to take things different ways, it seems to me to be best policy to try to take a medication for it's optimal effect. So here is where a Doc may say you can do whatever, but a Pharmacist will tell you what is actually recommended (if there is a recommendation).
Cheers,
Gayle
Gayle,
I have CC. There is no treatment for CC that works for everyone. Entocort use for CC was off label use and my doctor had to apply to the company for me to be able to use it for off use at that time. The pharmacist can only look up preferred dosage use for a drug that is used for a specific purpose. They can tell you general interactions between drugs as well.
It took me a long time to find a doctor who actually had patients with CC and he only had a dozen. When I was diagnosed patients were told there was no "cure" and patients didn't come back... Mine was diagnosed at a teaching hospital where the doctor was "thrilled" to see an actual case about which he had taught but never once seen in person in over 20 years! They wrote me up and presented my case at a conference looking for doctors who were actively treating CC patients.. No doctor had repeat CC patients.. after all who goes back to a doctor who says there is nothing they can do for them.
My GI doc trained under the doctor who diagnosed me. He had no problem with me using information from this site and anywhere else I might find help. He is the first to admit that no one knows what really will work for any patient nor how long it will work. He gave me all of the options I might want to try from diet to drugs. I passed on all usual cancer treatment drugs that were used for CC at the time.. too risky for me. Tried asacol and got sick as a dog. Used lomotil until entocort came back on the market.
To say there are only a few doctors I trust is an understatement....LOL When it comes CC/MC we are basically on our own and can only hope to find an open minded doctor who isn't an idiot...:)
grannyh
I have CC. There is no treatment for CC that works for everyone. Entocort use for CC was off label use and my doctor had to apply to the company for me to be able to use it for off use at that time. The pharmacist can only look up preferred dosage use for a drug that is used for a specific purpose. They can tell you general interactions between drugs as well.
It took me a long time to find a doctor who actually had patients with CC and he only had a dozen. When I was diagnosed patients were told there was no "cure" and patients didn't come back... Mine was diagnosed at a teaching hospital where the doctor was "thrilled" to see an actual case about which he had taught but never once seen in person in over 20 years! They wrote me up and presented my case at a conference looking for doctors who were actively treating CC patients.. No doctor had repeat CC patients.. after all who goes back to a doctor who says there is nothing they can do for them.
My GI doc trained under the doctor who diagnosed me. He had no problem with me using information from this site and anywhere else I might find help. He is the first to admit that no one knows what really will work for any patient nor how long it will work. He gave me all of the options I might want to try from diet to drugs. I passed on all usual cancer treatment drugs that were used for CC at the time.. too risky for me. Tried asacol and got sick as a dog. Used lomotil until entocort came back on the market.
To say there are only a few doctors I trust is an understatement....LOL When it comes CC/MC we are basically on our own and can only hope to find an open minded doctor who isn't an idiot...:)
grannyh
HI again Gh, 
You and I are pretty much in the same boat. I also have the CC form of MC. However, I believe that your diagnosis was well before mine. So you are longer in this MC/CC boat than I am !!
Won't go into all the history. but this goes back about 4 years ago – GI Doc called with Biopsy results and said "what you have is called Collegenous Colitis. What I prescribe for this condition is called Entocort, I want you to see the PA in 3 weeks to see how you are getting along."
So ... thus began my association with Entocort -- (and that PA). I was to take Entocort for 3 months at 9mg per day and then stop. In my case, the response to this drug was FAST and good. And at the end of 12 weeks I stopped as was told. At somewhere around 7 or 8 weeks I began to relapse.
I won't go into my assocacian with the PA in that practice, except to say that I tried to be patient with her .... I actually gave her 3 strikes before I said "OUT … enough is enough of this C---", as by that point it was evident that I, who know virtually nothing about this condition, knew more than she did!!! So this person is taking both my time, and money. Therefore … I must find another source of treatment, and hopefully management. So I called to see one of the GI's at Mayo who deal al lot in the area of Inflammatory Bowel Diseases. I had to wait for the Doc’s I wanted, but it was worth the wait.
Once I was in Clinic, that first visit was about 40 minutes of information overload about what they know (AND DON’T KNOW) about this condition, including the anatomy chart and graphics etc. . Also about their preferred way of going about trying various medications, and what they were, and how they differed. WHOW – did I leave clinic that day with a head stuffed with information.
Of course one of my early comments had been that I was looking for how to manage this condition. His response was — and here I am paraphrasing – “We (at Mayo) do not have a protocol for managing this condition. We try to see what works for the patient.” I was dumbfounded, because as far as I was concerned – Mayo had a Protocol for EVERYTHING!!
I think you and I have been very fortunate to have been able to find Medical direction for this condition that is as knowledgeable as possible at the moment. I cringe at many of the things I read here about their experiences with GI Docs all over this country, while at the same time I know that there are centers of excellence where there is some knowledge about how to work with people to help them manage this condition.
Cheers,
Gayle
You and I are pretty much in the same boat. I also have the CC form of MC. However, I believe that your diagnosis was well before mine. So you are longer in this MC/CC boat than I am !!
Won't go into all the history. but this goes back about 4 years ago – GI Doc called with Biopsy results and said "what you have is called Collegenous Colitis. What I prescribe for this condition is called Entocort, I want you to see the PA in 3 weeks to see how you are getting along."
So ... thus began my association with Entocort -- (and that PA). I was to take Entocort for 3 months at 9mg per day and then stop. In my case, the response to this drug was FAST and good. And at the end of 12 weeks I stopped as was told. At somewhere around 7 or 8 weeks I began to relapse.
I won't go into my assocacian with the PA in that practice, except to say that I tried to be patient with her .... I actually gave her 3 strikes before I said "OUT … enough is enough of this C---", as by that point it was evident that I, who know virtually nothing about this condition, knew more than she did!!! So this person is taking both my time, and money. Therefore … I must find another source of treatment, and hopefully management. So I called to see one of the GI's at Mayo who deal al lot in the area of Inflammatory Bowel Diseases. I had to wait for the Doc’s I wanted, but it was worth the wait.
Once I was in Clinic, that first visit was about 40 minutes of information overload about what they know (AND DON’T KNOW) about this condition, including the anatomy chart and graphics etc. . Also about their preferred way of going about trying various medications, and what they were, and how they differed. WHOW – did I leave clinic that day with a head stuffed with information.
Of course one of my early comments had been that I was looking for how to manage this condition. His response was — and here I am paraphrasing – “We (at Mayo) do not have a protocol for managing this condition. We try to see what works for the patient.” I was dumbfounded, because as far as I was concerned – Mayo had a Protocol for EVERYTHING!!
I think you and I have been very fortunate to have been able to find Medical direction for this condition that is as knowledgeable as possible at the moment. I cringe at many of the things I read here about their experiences with GI Docs all over this country, while at the same time I know that there are centers of excellence where there is some knowledge about how to work with people to help them manage this condition.
Cheers,
Gayle
Gayle,
Interesting to hear that even Mayo has no protocol:) No wonder people have so much trouble finding a decent doctor and help.
One problem with our "treatment choices" is COST. When I spent years on entocort..my insurance paid for it except for a co pay. Have run into others who I suggested they ask their doctor to try them on entocort.. but those folks had HMO's. The HMO docs used prednisone... cheap and way more dangerous than entocort. Prednisone does work.. I had a remission (before I got my diagnosis in 2002)... when I had to go on prednisone for something else. My research on prednisone told me that was not the route I wanted to take for remission. That is why I used lomotil prescribed by family doc until entocort came back on the market (under strict control for off label use).
Family doc though I might be celiac and had no problem with me getting information on this site. He believes the most important thing for a patient is quality of life. If lomotil let me have a few hours of freedom from the house.. fine.
It is a shame that CC is still lumped in with IBS (which means I don't know).
grannyh
Interesting to hear that even Mayo has no protocol:) No wonder people have so much trouble finding a decent doctor and help.
One problem with our "treatment choices" is COST. When I spent years on entocort..my insurance paid for it except for a co pay. Have run into others who I suggested they ask their doctor to try them on entocort.. but those folks had HMO's. The HMO docs used prednisone... cheap and way more dangerous than entocort. Prednisone does work.. I had a remission (before I got my diagnosis in 2002)... when I had to go on prednisone for something else. My research on prednisone told me that was not the route I wanted to take for remission. That is why I used lomotil prescribed by family doc until entocort came back on the market (under strict control for off label use).
Family doc though I might be celiac and had no problem with me getting information on this site. He believes the most important thing for a patient is quality of life. If lomotil let me have a few hours of freedom from the house.. fine.
It is a shame that CC is still lumped in with IBS (which means I don't know).
grannyh
And HI again gH,
But they do recognize this condition as a terribly vexing situation, and have various approaches to try ... what works for one may not be “the ticket” for another … and so on. So -- IOW -- although they have no basic “set in stone” or “Mayo Protocol” approach to this condition, they do have some preferential order for trying to go about things.
A little personal history here – I grew up in the shadow of Mayo, 35 miles away in a small town. So for me it was common place for parents, grandparents, aunts and uncles etc. to at one time or another be sent “over to the Clinic” when the family practice Doc’s thought something should be considered beyond their basic skills. So ‘the Clinic’ never seemed a terribly ominous or exceptional place to us when and where we were growing up. But they just did always have their ways of doing things.
MC (CC & LC) ARE NOT to be considered lumped in with IBS (irritable bowel syndrome).
Rather, MC (both subtypes) is considered to be an IBD --- (Inflammatory Bowel Disease). What MC is and how it is diagnosed are defined.
Cheers,
Gayle
Isn’t it though! ------ That fact alone stunned my little brain!!!Interesting to hear that even Mayo has no protocol :)
But they do recognize this condition as a terribly vexing situation, and have various approaches to try ... what works for one may not be “the ticket” for another … and so on. So -- IOW -- although they have no basic “set in stone” or “Mayo Protocol” approach to this condition, they do have some preferential order for trying to go about things.
A little personal history here – I grew up in the shadow of Mayo, 35 miles away in a small town. So for me it was common place for parents, grandparents, aunts and uncles etc. to at one time or another be sent “over to the Clinic” when the family practice Doc’s thought something should be considered beyond their basic skills. So ‘the Clinic’ never seemed a terribly ominous or exceptional place to us when and where we were growing up. But they just did always have their ways of doing things.
You got that right. But my problem isn’t that so many Doc’s don’t know about how to think about approaching this condition – but that the will not admit that they DO NOT KNOW.No wonder people have so much trouble finding a decent doctor and help.
Absolutely, --- but have you also seen the price of the ASA’s. Not as steep as Entocort, but very pricey. A lot of the huge price escalation which has occurred in the past 5 years on all drugs has been because of how the Medicare Part D drug benefit program was written In D.C. in about 2005. They -- in a very large part-- created this problem!!!! Enough said on that.One problem with our "treatment choices" is COST.
It is helpful if one understands how HMO’s basically work. As a part of the network, the Providers are bound to use most “cost effective” treatments and medication available for their customers, and also to stay within their system with referrals. Therefore, on the customer side of that insurance coverage equation, the insurance premiums are lower … as their treatments and/or referrals will be the least expensive possible. It's a business, and that's part of how they cut costs.When I spent years on entocort..my insurance paid for it except for a co pay. Have run into others who I suggested they ask their doctor to try them on entocort.. but those folks had HMO's. The HMO docs used prednisone... cheap and way more dangerous than entocort.
It is a shame that CC is still lumped in with IBS (which means I don't know).
MC (CC & LC) ARE NOT to be considered lumped in with IBS (irritable bowel syndrome).
Rather, MC (both subtypes) is considered to be an IBD --- (Inflammatory Bowel Disease). What MC is and how it is diagnosed are defined.
Cheers,
Gayle
