LisaGreene
New member
duplicate message for some reason- I deleted this one. 
enzyme
- Thread starter stefi74
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LisaGreene
New member
duplicate message for some reason- I deleted this one.
LisaGreene
New member
duplicate message for some reason- I deleted this one.
LisaGreene
New member
Our kids were both at their max based on weight for Creon. We added Prevacid for my son and Zegerid for my dauther (Prevacid didn't help her). These drugs helps the enzymes be more effective without increasing the amount. Hope this helps-
LisaGreene
New member
Our kids were both at their max based on weight for Creon. We added Prevacid for my son and Zegerid for my dauther (Prevacid didn't help her). These drugs helps the enzymes be more effective without increasing the amount. Hope this helps-
LisaGreene
New member
Our kids were both at their max based on weight for Creon. We added Prevacid for my son and Zegerid for my dauther (Prevacid didn't help her). These drugs helps the enzymes be more effective without increasing the amount. Hope this helps-
I see a CF Pulminary Specialist at the Adult CF Clinic at Massachusetts General Hospital. I also see a Gastroenterologist at Beth Iasael Deaconess Medical Center In Boston. The Gastroenterologist is one of the few Cystic Fibrosis Foundation Gastro Researchers.
Through a trial and error approach, under the care of the Gastroenterologist, it was determined that I should take 10 Creon 24 (24,000) with every meal and snack. This has been in effect for almost 5 years.
24000 X 50 = 1,200,000 units of Lipase per day. I weigh 160 pounds. That equals 72.5 kilos. If I were limited to 10000 units per day per kilo, I would be limited to 725,000 units per day. I take 165% of manufacturer recomended dosage.
At 725,000 I would have continous severe abdominal pains every day of my life. I would have continous diarrhea and a serious lack of hydration that would be impossible to keep up with by drinking water.
In short, I would be dead. 10,000 units per kilo is a guideline and not cast in concrete. Your Doctor needs to do more research and perhaps some consultation.
Bill
Through a trial and error approach, under the care of the Gastroenterologist, it was determined that I should take 10 Creon 24 (24,000) with every meal and snack. This has been in effect for almost 5 years.
24000 X 50 = 1,200,000 units of Lipase per day. I weigh 160 pounds. That equals 72.5 kilos. If I were limited to 10000 units per day per kilo, I would be limited to 725,000 units per day. I take 165% of manufacturer recomended dosage.
At 725,000 I would have continous severe abdominal pains every day of my life. I would have continous diarrhea and a serious lack of hydration that would be impossible to keep up with by drinking water.
In short, I would be dead. 10,000 units per kilo is a guideline and not cast in concrete. Your Doctor needs to do more research and perhaps some consultation.
Bill
I see a CF Pulminary Specialist at the Adult CF Clinic at Massachusetts General Hospital. I also see a Gastroenterologist at Beth Iasael Deaconess Medical Center In Boston. The Gastroenterologist is one of the few Cystic Fibrosis Foundation Gastro Researchers.
Through a trial and error approach, under the care of the Gastroenterologist, it was determined that I should take 10 Creon 24 (24,000) with every meal and snack. This has been in effect for almost 5 years.
24000 X 50 = 1,200,000 units of Lipase per day. I weigh 160 pounds. That equals 72.5 kilos. If I were limited to 10000 units per day per kilo, I would be limited to 725,000 units per day. I take 165% of manufacturer recomended dosage.
At 725,000 I would have continous severe abdominal pains every day of my life. I would have continous diarrhea and a serious lack of hydration that would be impossible to keep up with by drinking water.
In short, I would be dead. 10,000 units per kilo is a guideline and not cast in concrete. Your Doctor needs to do more research and perhaps some consultation.
Bill
Through a trial and error approach, under the care of the Gastroenterologist, it was determined that I should take 10 Creon 24 (24,000) with every meal and snack. This has been in effect for almost 5 years.
24000 X 50 = 1,200,000 units of Lipase per day. I weigh 160 pounds. That equals 72.5 kilos. If I were limited to 10000 units per day per kilo, I would be limited to 725,000 units per day. I take 165% of manufacturer recomended dosage.
At 725,000 I would have continous severe abdominal pains every day of my life. I would have continous diarrhea and a serious lack of hydration that would be impossible to keep up with by drinking water.
In short, I would be dead. 10,000 units per kilo is a guideline and not cast in concrete. Your Doctor needs to do more research and perhaps some consultation.
Bill
I see a CF Pulminary Specialist at the Adult CF Clinic at Massachusetts General Hospital. I also see a Gastroenterologist at Beth Iasael Deaconess Medical Center In Boston. The Gastroenterologist is one of the few Cystic Fibrosis Foundation Gastro Researchers.
<br />
<br />Through a trial and error approach, under the care of the Gastroenterologist, it was determined that I should take 10 Creon 24 (24,000) with every meal and snack. This has been in effect for almost 5 years.
<br />
<br />24000 X 50 = 1,200,000 units of Lipase per day. I weigh 160 pounds. That equals 72.5 kilos. If I were limited to 10000 units per day per kilo, I would be limited to 725,000 units per day. I take 165% of manufacturer recomended dosage.
<br />
<br />At 725,000 I would have continous severe abdominal pains every day of my life. I would have continous diarrhea and a serious lack of hydration that would be impossible to keep up with by drinking water.
<br />
<br />In short, I would be dead. 10,000 units per kilo is a guideline and not cast in concrete. Your Doctor needs to do more research and perhaps some consultation.
<br />
<br />Bill
<br />
<br />
<br />
<br />
<br />
<br />Through a trial and error approach, under the care of the Gastroenterologist, it was determined that I should take 10 Creon 24 (24,000) with every meal and snack. This has been in effect for almost 5 years.
<br />
<br />24000 X 50 = 1,200,000 units of Lipase per day. I weigh 160 pounds. That equals 72.5 kilos. If I were limited to 10000 units per day per kilo, I would be limited to 725,000 units per day. I take 165% of manufacturer recomended dosage.
<br />
<br />At 725,000 I would have continous severe abdominal pains every day of my life. I would have continous diarrhea and a serious lack of hydration that would be impossible to keep up with by drinking water.
<br />
<br />In short, I would be dead. 10,000 units per kilo is a guideline and not cast in concrete. Your Doctor needs to do more research and perhaps some consultation.
<br />
<br />Bill
<br />
<br />
<br />
<br />
Bill, it's true that your dose works for YOU, and since it's effective and has been safe, you should not change a thing.
However, it's *also* true that your dose raises the risk for a condition called fibrosing colonopathy. Due to this well-documented risk, the guideline is used for 10,000units of lipase per kg per day, with a caveat that 'most' are able to be limited to this dose and have acceptable results.
However, it's *also* true that your dose raises the risk for a condition called fibrosing colonopathy. Due to this well-documented risk, the guideline is used for 10,000units of lipase per kg per day, with a caveat that 'most' are able to be limited to this dose and have acceptable results.
Bill, it's true that your dose works for YOU, and since it's effective and has been safe, you should not change a thing.
However, it's *also* true that your dose raises the risk for a condition called fibrosing colonopathy. Due to this well-documented risk, the guideline is used for 10,000units of lipase per kg per day, with a caveat that 'most' are able to be limited to this dose and have acceptable results.
However, it's *also* true that your dose raises the risk for a condition called fibrosing colonopathy. Due to this well-documented risk, the guideline is used for 10,000units of lipase per kg per day, with a caveat that 'most' are able to be limited to this dose and have acceptable results.
Bill, it's true that your dose works for YOU, and since it's effective and has been safe, you should not change a thing.
<br />
<br />However, it's *also* true that your dose raises the risk for a condition called fibrosing colonopathy. Due to this well-documented risk, the guideline is used for 10,000units of lipase per kg per day, with a caveat that 'most' are able to be limited to this dose and have acceptable results.
<br />
<br />However, it's *also* true that your dose raises the risk for a condition called fibrosing colonopathy. Due to this well-documented risk, the guideline is used for 10,000units of lipase per kg per day, with a caveat that 'most' are able to be limited to this dose and have acceptable results.
LisaGreene
New member
<P>You're right Harriett, well said. I know someone who got this and ended up having a large part of the colon removed. Not pretty. <img src="i/expressions/face-icon-small-sad.gif" border="0"> </P>
<P> </P>
<P>And, Bill, I am so glad this is working for you. I will definitely keep your info in mind if it becomes an issue again. Thanks for being here! It's wonderful to have someone your age with CF here with us. </P>
<P> </P>
<P>And, Bill, I am so glad this is working for you. I will definitely keep your info in mind if it becomes an issue again. Thanks for being here! It's wonderful to have someone your age with CF here with us. </P>
LisaGreene
New member
<P>You're right Harriett, well said.I know someone who got this and ended up having a large part of the colon removed. Not pretty. <img src="i/expressions/face-icon-small-sad.gif" border="0"> </P>
<P></P>
<P>And, Bill, I am so glad this is working for you. I will definitely keep your info in mind if it becomes an issue again. Thanks for being here! It's wonderful to have someone your age with CF here with us. </P>
<P></P>
<P>And, Bill, I am so glad this is working for you. I will definitely keep your info in mind if it becomes an issue again. Thanks for being here! It's wonderful to have someone your age with CF here with us. </P>
LisaGreene
New member
<P>You're right Harriett, well said.I know someone who got this and ended up having a large part of the colon removed. Not pretty. <img src="i/expressions/face-icon-small-sad.gif" border="0"> </P>
<P></P>
<P>And, Bill, I am so glad this is working for you. I will definitely keep your info in mind if it becomes an issue again. Thanks for being here! It's wonderful to have someone your age with CF here with us. <BR></P>
<P></P>
<P>And, Bill, I am so glad this is working for you. I will definitely keep your info in mind if it becomes an issue again. Thanks for being here! It's wonderful to have someone your age with CF here with us. <BR></P>
Harriet, Lisa:
I agree and that is why i prefaced my remarks with the expertice that brought me to this dosage. I didn't want antone to think that I did/am doing this on my own. I'm not suggesting this for ANYONE. Just noting that there is more leaway than that has been suggested. If you read back you will find that I suggested that she start with a VERY SMALL dose and work up to the smallest effective dose.
Bill
I agree and that is why i prefaced my remarks with the expertice that brought me to this dosage. I didn't want antone to think that I did/am doing this on my own. I'm not suggesting this for ANYONE. Just noting that there is more leaway than that has been suggested. If you read back you will find that I suggested that she start with a VERY SMALL dose and work up to the smallest effective dose.
Bill
Harriet, Lisa:
I agree and that is why i prefaced my remarks with the expertice that brought me to this dosage. I didn't want antone to think that I did/am doing this on my own. I'm not suggesting this for ANYONE. Just noting that there is more leaway than that has been suggested. If you read back you will find that I suggested that she start with a VERY SMALL dose and work up to the smallest effective dose.
Bill
I agree and that is why i prefaced my remarks with the expertice that brought me to this dosage. I didn't want antone to think that I did/am doing this on my own. I'm not suggesting this for ANYONE. Just noting that there is more leaway than that has been suggested. If you read back you will find that I suggested that she start with a VERY SMALL dose and work up to the smallest effective dose.
Bill
Harriet, Lisa:
<br />
<br />I agree and that is why i prefaced my remarks with the expertice that brought me to this dosage. I didn't want antone to think that I did/am doing this on my own. I'm not suggesting this for ANYONE. Just noting that there is more leaway than that has been suggested. If you read back you will find that I suggested that she start with a VERY SMALL dose and work up to the smallest effective dose.
<br />
<br />Bill
<br />
<br />I agree and that is why i prefaced my remarks with the expertice that brought me to this dosage. I didn't want antone to think that I did/am doing this on my own. I'm not suggesting this for ANYONE. Just noting that there is more leaway than that has been suggested. If you read back you will find that I suggested that she start with a VERY SMALL dose and work up to the smallest effective dose.
<br />
<br />Bill
Harriet:
I would refer you to an artical in the May 1997 issue of The New England Journal of Medicine. Titled HIGH-DOSE PANCREATIC-ENZYME SUPPLEMENT AND FIBROSING COLONOPATHY IN CHILDREN WITH CYSTIC FIBROSIS.
This article expressly excluded CREON from this problem. You will have to read the article not just the abstract.
Bill
I would refer you to an artical in the May 1997 issue of The New England Journal of Medicine. Titled HIGH-DOSE PANCREATIC-ENZYME SUPPLEMENT AND FIBROSING COLONOPATHY IN CHILDREN WITH CYSTIC FIBROSIS.
This article expressly excluded CREON from this problem. You will have to read the article not just the abstract.
Bill
Harriet:
I would refer you to an artical in the May 1997 issue of The New England Journal of Medicine. Titled HIGH-DOSE PANCREATIC-ENZYME SUPPLEMENT AND FIBROSING COLONOPATHY IN CHILDREN WITH CYSTIC FIBROSIS.
This article expressly excluded CREON from this problem. You will have to read the article not just the abstract.
Bill
I would refer you to an artical in the May 1997 issue of The New England Journal of Medicine. Titled HIGH-DOSE PANCREATIC-ENZYME SUPPLEMENT AND FIBROSING COLONOPATHY IN CHILDREN WITH CYSTIC FIBROSIS.
This article expressly excluded CREON from this problem. You will have to read the article not just the abstract.
Bill