I noticed your response to Mars' question in another topic. I'm certainly no doctor, but I think you should give some serious thought to taking a full dose of Entocort, (9 mg per day), until you get your symptoms under control. Then, you can reduce it again, to a maintenance dose, after your system is working smoothy.
Trying to stop a flare with a maintenance dose will just prolong the agony, and run the risk of developing a tolerance for budesonide, so that it may take a higher dose to get results, the next time you have a flare.
I used to raise a lot of cattle, and when you raise livestock for a living, you have to do most of your own vet work. If you called a vet every time you had a sick calf, beef would have to sell for about $50 per pound, to break even in the cattle business. In general, one can only afford a vet's services for pets - in production agriculture, it's just not feasable, except on rare occasions. What I am getting to is that over many years of doctoring sick calves, and other animals, one of the first things I learned was to give an adequate dose of whatever med I was using, because too little will usually not do the job, and then additional treatments are necessary to undo the damage that accumulated due to failing to resolve the problem with the initial treatment. Also, one learns that overdoses are not only unnecessarily expensive, but may be risky, and provide no benefits over a proper dose, (based on body weight).
According to research reports I've seen, (based on treatment of patients with active Crohn's disease, and ulcertive colitis), the recommended dosage of Entocort, (9 mg per day), will normally bring remission in slightly over 50% of patients, over a treatment period of, (if I recall correctly), 14 days. A double dose, (18 mg per day), will bring remission in almost 75% of patients, in the same timeframe. I'm not aware of any statistics from trials using reduced dosages, but as you can surmise, less than the recommended dose is not likely to give spectacular results during a flare.
Please don't misinterpret what I'm saying here, because I can't give any medical advice, I'm just pointing out why underdosing does not normally give good results during an active flare.
Love,
Tex
Jill, Regarding The Entocort . . .
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
Jill, Regarding The Entocort . . .
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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harvest_table
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Jill,
I have also been thinking about your current flare and agree with Wayne- 100%. You may be under dosing since Entocort has worked for you in the past and if you increase your dose to at least 9mgs, or more you may have a better chance of getting out of this flare. Since you have taken Entocort in the past with success ( I have) you may be developing a threshold to Entocort.
Since your banking on Entorcort to help you now if I was you, I agee with Wayne and increase your dosage and see what happens.
I'm not qualified to give medical advice either--just my thoughts and wishes for you to recover soon.
Love,
Joanna
I have also been thinking about your current flare and agree with Wayne- 100%. You may be under dosing since Entocort has worked for you in the past and if you increase your dose to at least 9mgs, or more you may have a better chance of getting out of this flare. Since you have taken Entocort in the past with success ( I have) you may be developing a threshold to Entocort.
Since your banking on Entorcort to help you now if I was you, I agee with Wayne and increase your dosage and see what happens.
I'm not qualified to give medical advice either--just my thoughts and wishes for you to recover soon.
Love,
Joanna
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bobh
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Jill, when I had a flare that wouldn't go away for 6 months, I tried lots of diet remedies and it just kept raging. This is what knocked it out:
I was given a script for 60 mg prednisone for 2 days, then 50 mg for 2 days, then 40 for 2 days, then 30 for days, then 20 - and also introducing 2 Entocort for 2 days. Then 10 mg Prednisone and 2 entocort for 2 days.
After that, I was off the Prednisone, and only doing the Entocort (2 pills a day) while maintaining Asacol at 6 pills a day (2 pills, 3x a day).
My "D" stopped within 24 hours of starting the Prednisone. It was amazing. I know my dose of Entocort was only 2 a day, rather than the standard 3 - and my MD said I could take 3 if needed. But the above protocol STOPPED the flair before I even started the Entocort. It has been 45 days, and had formed stools every day, BM only in the morning (big change from non-stop noise maker, with citations for disturbing the peace at all hours of the day/night).
I would agree with what others have said, doing the standard dosage (3 Entocort) but wanted to put in my 2 cents if that doesn't stop your flair. My med history post is here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794
If someone is trying to make sense out of this thread... It started out here on Jill's Entocort dosage question: http://www.perskyfarms.com/phpBB2/viewtopic.php?p=29986
I was given a script for 60 mg prednisone for 2 days, then 50 mg for 2 days, then 40 for 2 days, then 30 for days, then 20 - and also introducing 2 Entocort for 2 days. Then 10 mg Prednisone and 2 entocort for 2 days.
After that, I was off the Prednisone, and only doing the Entocort (2 pills a day) while maintaining Asacol at 6 pills a day (2 pills, 3x a day).
My "D" stopped within 24 hours of starting the Prednisone. It was amazing. I know my dose of Entocort was only 2 a day, rather than the standard 3 - and my MD said I could take 3 if needed. But the above protocol STOPPED the flair before I even started the Entocort. It has been 45 days, and had formed stools every day, BM only in the morning (big change from non-stop noise maker, with citations for disturbing the peace at all hours of the day/night).
I would agree with what others have said, doing the standard dosage (3 Entocort) but wanted to put in my 2 cents if that doesn't stop your flair. My med history post is here: http://www.perskyfarms.com/phpBB2/viewtopic.php?t=4794
If someone is trying to make sense out of this thread... It started out here on Jill's Entocort dosage question: http://www.perskyfarms.com/phpBB2/viewtopic.php?p=29986
Bob H
Hi Bob...thanks for sharing...I am going to try the 3 Entocort/day before I talk to the doc about Pred. I have heard so many bad things about it that I am afraid of it. 
I am allergic to Asacol, so that's out of the question. I'm hoping the Entocort kicks-in soon. I am also staying away from fruit and veggies...should be interesting at dinner tonight...I am meeting my sister and step mom at a Mexican restaurant....hahahaha. I need to be careful because I will be riding in a school van with 6 other people tomorrow morning....conference in Seattle. 
May take some Imodium, hahahaha....TTFN....JJ
I am allergic to Asacol, so that's out of the question. I'm hoping the Entocort kicks-in soon. I am also staying away from fruit and veggies...should be interesting at dinner tonight...I am meeting my sister and step mom at a Mexican restaurant....hahahaha. I need to be careful because I will be riding in a school van with 6 other people tomorrow morning....conference in Seattle. May take some Imodium, hahahaha....TTFN....JJ-
bobh
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I would take 2 immodium the night before a scenario like that, AND 2 first thing the next morning. Before my recent remission, I would HAVE to plan ahead and use "the cork" before an event like you are describing.JJ wrote:I will be riding in a school van with 6 other people tomorrow morning....
The bummer is that it doesn't last - but it gets you through a day that you know is going to be awkward in terms of getting to a toilet. I remember Dr. Fine's site saying something along the lines of "immodium only delays the D", but a delay was OK with me when I knew I had to be on the road.
Good luck - and I hope you can achieve a remission like the one I am enjoying right now. I would jump in a van and drive across the country right now if a hurricane hit, and have no problems at all. What a difference...
Bob H
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harvest_table
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Jill, it will be good news to see if you can recover from your flare by increasing the Entocort.
Bob, it's wonderful your feeling so good! Thanks so much for sharing your experiences and enjoy every minute of your new found health.
Wayne, we are not cattle but your analogy it perfect..... Over dosing or getting use to a medication so it's doing nothing makes alot of sense. Sometimes, that happens with diet too. MC is complicated, to say the least.
Love,
Joanna
Bob, it's wonderful your feeling so good! Thanks so much for sharing your experiences and enjoy every minute of your new found health.
Wayne, we are not cattle but your analogy it perfect..... Over dosing or getting use to a medication so it's doing nothing makes alot of sense. Sometimes, that happens with diet too. MC is complicated, to say the least.
Love,
Joanna
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Jill, I hope all went well - let us know, okay? Fingers crossed for you.
Love,
Polly
P.S. You are one brave lady. When I was flaring, I always insisted on being the driver so that I had control over when/where we stopped. LOL!
Love,
Polly
P.S. You are one brave lady. When I was flaring, I always insisted on being the driver so that I had control over when/where we stopped. LOL!
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
Good Morning!
All went well! I took 2 Imodium before I left...I didn't have any mivement at all yesterday. This morning, voila! Norman was back! Thanks everybody for suggesting that I go back to 3 Entocort for a while. My next question is...how long should I stay on 3/day? A mo? A week?
On a differnt topic...just heard on the news that there was another earthquake at Mt Rainier. Not long ago, there was a 4 point something on the east flank...very unusual because mort earthquakes happen on the west side. They didn't necessarily think it meant anything about renewed volcanic activity, but evidently, there was another one this morning, so it raises new concerns. If that mountain blows...it will be a MAJOR disaster...there are thousands of people who have built there homes in the Puyallup valley in the shadow of the mountain. It is unlikely that the mudflow would reach me...I live on the hill overlooking the harbor, but life as we know it would never be the same in this area if she blows.
I'll keep you posted...TTFN...JJ
All went well! I took 2 Imodium before I left...I didn't have any mivement at all yesterday. This morning, voila! Norman was back! Thanks everybody for suggesting that I go back to 3 Entocort for a while. My next question is...how long should I stay on 3/day? A mo? A week?
On a differnt topic...just heard on the news that there was another earthquake at Mt Rainier. Not long ago, there was a 4 point something on the east flank...very unusual because mort earthquakes happen on the west side. They didn't necessarily think it meant anything about renewed volcanic activity, but evidently, there was another one this morning, so it raises new concerns. If that mountain blows...it will be a MAJOR disaster...there are thousands of people who have built there homes in the Puyallup valley in the shadow of the mountain. It is unlikely that the mudflow would reach me...I live on the hill overlooking the harbor, but life as we know it would never be the same in this area if she blows.
I'll keep you posted...TTFN...JJ
Hi Jll,
Well, that's a relief! I'm glad it's working as we hoped it would.
How long the 9 mg dose should be continued is a good question. The "normal" recommrnded treatment period is, (I believe), about 6 to 8 weeks, (According to recommendations by the Mayo Clinic). I would suspect that you might not have to maintain the higher dosage rate for that long, however, as long as you're reasonably careful about what you eat, and you continue to take a reduced, (maintenance), dose.
The fact that 6 mg didn't work, though, and 9 mg brought prompt results, suggests that you may need to stay on it for at least a week or so before tapering down. Again, please don't construe this as medical advice, but if I were in your shoes, I think that I would continue the 9mg dose for at least a week, and then I would decide whether or not to continue for another week, based on how "confident" I felt about my condition at that point.
If I were still a bit uneasy about the situation at that point, I would probably continue the higher dose for another week. If I felt very confident, I might take 9mg every other day, for example, during the second week, and 6 mg on the other days. After I felt secure with that, then I might take 6 mg for a week or so, followed by a week or so with alternating doses of 6 mg and 3 mg per day, as I continued to reduce the rate back down a minimum maintenance dose that works.
I'm wondering if you'll be able to go all the way back down to the previous maintenance dosage rate that you were using, however. If I recall correctly, it was 3 mg twice a week, (please correct me if I'm wrong). I have a hunch that you won't be able to go any lower than 3 mg per day, (every day), without having problems. I could certainly be all wet, though.
The tricky part is that it can take as long as 8 weeks for symptoms to return, (though it usually happens much sooner), after a treatment program is ended. In view of that possibility, if you reduce the dosage too quickly, or too far, you might think that you are doing just fine, because of the absence of symptoms, but the symptoms may return later, after the budesonide is slowly eliminated from your body.
You may be interested in this followup study of Entocort treatment effectiveness. Note that the 6 week treatment at 9 mg per day was 85% effective, but of those 85% who achieved remission, 61% had a relapse within an average of 2 weeks after the treatment was ended. According to this study, being younger than 60, increases the odds of a relapse after the termination of treatment. This study makes it pretty clear that a maintenance dose is necessary in most cases, especially for those patients under 60 years of age.
http://www.ingentaconnect.com/content/b ... 3hag.alice
The bottom line is, that's not an easy question to answer.
Tex
P S I certainly hope that Mother Nature doesn't try to rearrange the side of that mountain.
Well, that's a relief! I'm glad it's working as we hoped it would.
How long the 9 mg dose should be continued is a good question. The "normal" recommrnded treatment period is, (I believe), about 6 to 8 weeks, (According to recommendations by the Mayo Clinic). I would suspect that you might not have to maintain the higher dosage rate for that long, however, as long as you're reasonably careful about what you eat, and you continue to take a reduced, (maintenance), dose.
The fact that 6 mg didn't work, though, and 9 mg brought prompt results, suggests that you may need to stay on it for at least a week or so before tapering down. Again, please don't construe this as medical advice, but if I were in your shoes, I think that I would continue the 9mg dose for at least a week, and then I would decide whether or not to continue for another week, based on how "confident" I felt about my condition at that point.
If I were still a bit uneasy about the situation at that point, I would probably continue the higher dose for another week. If I felt very confident, I might take 9mg every other day, for example, during the second week, and 6 mg on the other days. After I felt secure with that, then I might take 6 mg for a week or so, followed by a week or so with alternating doses of 6 mg and 3 mg per day, as I continued to reduce the rate back down a minimum maintenance dose that works.
I'm wondering if you'll be able to go all the way back down to the previous maintenance dosage rate that you were using, however. If I recall correctly, it was 3 mg twice a week, (please correct me if I'm wrong). I have a hunch that you won't be able to go any lower than 3 mg per day, (every day), without having problems. I could certainly be all wet, though.
The tricky part is that it can take as long as 8 weeks for symptoms to return, (though it usually happens much sooner), after a treatment program is ended. In view of that possibility, if you reduce the dosage too quickly, or too far, you might think that you are doing just fine, because of the absence of symptoms, but the symptoms may return later, after the budesonide is slowly eliminated from your body.
You may be interested in this followup study of Entocort treatment effectiveness. Note that the 6 week treatment at 9 mg per day was 85% effective, but of those 85% who achieved remission, 61% had a relapse within an average of 2 weeks after the treatment was ended. According to this study, being younger than 60, increases the odds of a relapse after the termination of treatment. This study makes it pretty clear that a maintenance dose is necessary in most cases, especially for those patients under 60 years of age.
http://www.ingentaconnect.com/content/b ... 3hag.alice
The bottom line is, that's not an easy question to answer.
Tex
P S I certainly hope that Mother Nature doesn't try to rearrange the side of that mountain.
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...great info Tex...I think you're right about staying on it for a while. I ate salad last night and some wonderful fresh grapes this afternoon. I couldn't help it...I was craving fresh fruit and veggies. So far so good...I may never get back to 3mg every third day...that was amazing. Too much stress in my life right now I expect.
Off the subject....I have a question and can't figure out where to go on the ATT site to get help. I am looking into getting a faster internet connection, ie...broadband. One of my students needs a wireless connection and can't get it with my dial-up service. OK, here' the deal...if I switch to high speed ATT service, is it possible to keep my same e-mail address? Is it expensive for high-speed? I may call them on Monday since it's so hard to find the answer on their site.
Nite niite and thanks..JJ
Off the subject....I have a question and can't figure out where to go on the ATT site to get help. I am looking into getting a faster internet connection, ie...broadband. One of my students needs a wireless connection and can't get it with my dial-up service. OK, here' the deal...if I switch to high speed ATT service, is it possible to keep my same e-mail address? Is it expensive for high-speed? I may call them on Monday since it's so hard to find the answer on their site.
Nite niite and thanks..JJ