enzyme

Printer · Aug 20, 2011

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

LisaGreene · Aug 21, 2011

Thanks Bill for reiterating your "caviats" and the references to this research paper. Very interesting- we are on Creon. I will keep this in my files if ever needed down the road. I wonder if there has been anything published more recently. Thanks again, Lisa

LisaGreene · Aug 21, 2011

Thanks Bill for reiterating your "caviats" and the references to this research paper. Very interesting- we are on Creon. I will keep this in my files if ever needed down the road. I wonder if there has been anything published more recently. Thanks again, Lisa

LisaGreene · Aug 21, 2011

Thanks Bill for reiterating your "caviats" and the references to this research paper. Very interesting- we are on Creon. I will keep this in my files if ever needed down the road. I wonder if there has been anything published more recently. Thanks again, Lisa

stefi74 · Aug 22, 2011

If it was a problem of too much acidity in the stomach, how to resolve? You use drugs? Also Here in Italy there are many conflicting opinions on the effect of too much enzymes.

stefi74 · Aug 22, 2011

If it was a problem of too much acidity in the stomach, how to resolve? You use drugs? Also Here in Italy there are many conflicting opinions on the effect of too much enzymes.

stefi74 · Aug 22, 2011

If it was a problem of too much acidity in the stomach, how to resolve? You use drugs? Also Here in Italy there are many conflicting opinions on the effect of too much enzymes.

Printer · Aug 22, 2011

Stefi:

Lets deal wit one situation at a time. Are you clear on the Creon issue?

Bill

Printer · Aug 22, 2011

Stefi:

Lets deal wit one situation at a time. Are you clear on the Creon issue?

Bill

Printer · Aug 22, 2011

Stefi:
 
 Lets deal wit one situation at a time. Are you clear on the Creon issue?
 
 Bill

Printer · Aug 22, 2011

Another comment. If greasy stools is the ONLY reason that you are increasing the Creon, then it wont work. Your daughter will most likely have greasy stools for the rest of her life, no matter how much Creon that you give to her. In my mind, only increase Creon if she has digestive discomfort or constant diarreha.

Bill

Printer · Aug 22, 2011

Another comment. If greasy stools is the ONLY reason that you are increasing the Creon, then it wont work. Your daughter will most likely have greasy stools for the rest of her life, no matter how much Creon that you give to her. In my mind, only increase Creon if she has digestive discomfort or constant diarreha.

Bill

Printer · Aug 22, 2011

Another comment. If greasy stools is the ONLY reason that you are increasing the Creon, then it wont work. Your daughter will most likely have greasy stools for the rest of her life, no matter how much Creon that you give to her. In my mind, only increase Creon if she has digestive discomfort or constant diarreha.
 
 Bill

amber682 · Aug 22, 2011

stefi, we ran into this problem with my son once. He needed more enzymes but was already at the highest dosage. His doctos added zantac (a reflux medication) even though he didn't have reflux, because they seem to help the enzymes to work better. It definitely helped him. This was a couple of years ago, he is now on prevacid instead of zantac. Something to ask the docs about.

amber682 · Aug 22, 2011

stefi, we ran into this problem with my son once. He needed more enzymes but was already at the highest dosage. His doctos added zantac (a reflux medication) even though he didn't have reflux, because they seem to help the enzymes to work better. It definitely helped him. This was a couple of years ago, he is now on prevacid instead of zantac. Something to ask the docs about.

amber682 · Aug 22, 2011

stefi, we ran into this problem with my son once. He needed more enzymes but was already at the highest dosage. His doctos added zantac (a reflux medication) even though he didn't have reflux, because they seem to help the enzymes to work better. It definitely helped him. This was a couple of years ago, he is now on prevacid instead of zantac. Something to ask the docs about.

hmw · Aug 23, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Printer

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</end quote></div> I am looking into this a bit more. According to this article, the Creon exclusion was seen in a case study in the UK involving 14 patients. Given the cautions on the Creon site and prescribing info (will paste below), I don't think a case study that small rules it out. Creon's website states this on the bottom of *every* page: Important Safety Information Fibrosing colonopathy, is associated with high-dose use of pancreatic enzyme replacement
in the treatment of cystic fibrosis patients. Exercise caution when doses of CREON
exceed 2,500 lipase units/kg of body weight per meal (or greater than 10,000 lipase
units/kg of body weight per day).
 In the full prescribing info for Creon: <div class="FTQUOTE"><begin quote>5.1 Fibrosing Colonopathy Fibrosing colonopathy has been reported following treatment with different pancreatic enzyme products. 5, 6 Fibrosing colonopathy is a rare, serious adverse reaction initially described in association with high-dose pancreatic enzyme use, usually over a prolonged period of time and most commonly reported in pediatric patients with cystic fibrosis. The underlying mechanism of fibrosing colonopathy remains unknown. Doses of pancreatic enzyme products exceeding 6,000 lipase units/kg of body weight per meal have been associated with colonic stricture in children less than 12 years of age.1 Patients with fibrosing colonopathy should be closely monitored because some patients may be at risk of progressing to stricture formation. It is uncertain whether regression of fibrosing colonopathy occurs.1 It is generally recommended, unless clinically indicated that enzyme doses should be less than 2,500 lipase units/kg of body weight per meal (or less than 10,000 lipase units/kg of body weight per day) or less than 4,000 lipase units/g fat ingested per day [see Dosage and Administration (2.1)]. Doses greater than 2,500 lipase units/kg of body weight per meal (or greater than 10,000 lipase units/kg of body weight per day) should be used with caution and only if they are documented to be effective by 3-day fecal fat measures that indicate a significantly improved coefficient of fat absorption. Patients receiving higher doses than 6,000 lipase units/kg of body weight per meal should be examined and the dosage either immediately decreased or titrated downward to a lower range.</end quote></div> When Creon gained it's FDA approval, a Q&A sheet released addressed the risk of this as well. http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm149337.htm

hmw · Aug 23, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Printer

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</end quote> I am looking into this a bit more. According to this article, the Creon exclusion was seen in a case study in the UK involving 14 patients. Given the cautions on the Creon site and prescribing info (will paste below), I don't think a case study that small rules it out. Creon's website states this on the bottom of *every* page: Important Safety Information Fibrosing colonopathy, is associated with high-dose use of pancreatic enzyme replacement
in the treatment of cystic fibrosis patients. Exercise caution when doses of CREON
exceed 2,500 lipase units/kg of body weight per meal (or greater than 10,000 lipase
units/kg of body weight per day).
 In the full prescribing info for Creon: <div class="FTQUOTE"><begin quote>5.1 Fibrosing Colonopathy Fibrosing colonopathy has been reported following treatment with different pancreatic enzyme products. 5, 6 Fibrosing colonopathy is a rare, serious adverse reaction initially described in association with high-dose pancreatic enzyme use, usually over a prolonged period of time and most commonly reported in pediatric patients with cystic fibrosis. The underlying mechanism of fibrosing colonopathy remains unknown. Doses of pancreatic enzyme products exceeding 6,000 lipase units/kg of body weight per meal have been associated with colonic stricture in children less than 12 years of age.1 Patients with fibrosing colonopathy should be closely monitored because some patients may be at risk of progressing to stricture formation. It is uncertain whether regression of fibrosing colonopathy occurs.1 It is generally recommended, unless clinically indicated that enzyme doses should be less than 2,500 lipase units/kg of body weight per meal (or less than 10,000 lipase units/kg of body weight per day) or less than 4,000 lipase units/g fat ingested per day [see Dosage and Administration (2.1)]. Doses greater than 2,500 lipase units/kg of body weight per meal (or greater than 10,000 lipase units/kg of body weight per day) should be used with caution and only if they are documented to be effective by 3-day fecal fat measures that indicate a significantly improved coefficient of fat absorption. Patients receiving higher doses than 6,000 lipase units/kg of body weight per meal should be examined and the dosage either immediately decreased or titrated downward to a lower range.</end quote> When Creon gained it's FDA approval, a Q&A sheet released addressed the risk of this as well. http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm149337.htm

hmw · Aug 23, 2011

<div class="FTQUOTE"><begin quote>Originally posted by: Printer

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</end quote> I am looking into this a bit more. According to this article, the Creon exclusion was seen in a case study in the UK involving 14 patients. Given the cautions on the Creon site and prescribing info (will paste below), I don't think a case study that small rules it out. Creon's website states this on the bottom of *every* page: Important Safety Information Fibrosing colonopathy, is associated with high-dose use of pancreatic enzyme replacement
in the treatment of cystic fibrosis patients. Exercise caution when doses of CREON
exceed 2,500 lipase units/kg of body weight per meal (or greater than 10,000 lipase
units/kg of body weight per day).
 In the full prescribing info for Creon: <div class="FTQUOTE"><begin quote>5.1 Fibrosing Colonopathy Fibrosing colonopathy has been reported following treatment with different pancreatic enzyme products. 5, 6 Fibrosing colonopathy is a rare, serious adverse reaction initially described in association with high-dose pancreatic enzyme use, usually over a prolonged period of time and most commonly reported in pediatric patients with cystic fibrosis. The underlying mechanism of fibrosing colonopathy remains unknown. Doses of pancreatic enzyme products exceeding 6,000 lipase units/kg of body weight per meal have been associated with colonic stricture in children less than 12 years of age.1 Patients with fibrosing colonopathy should be closely monitored because some patients may be at risk of progressing to stricture formation. It is uncertain whether regression of fibrosing colonopathy occurs.1 It is generally recommended, unless clinically indicated that enzyme doses should be less than 2,500 lipase units/kg of body weight per meal (or less than 10,000 lipase units/kg of body weight per day) or less than 4,000 lipase units/g fat ingested per day [see Dosage and Administration (2.1)]. Doses greater than 2,500 lipase units/kg of body weight per meal (or greater than 10,000 lipase units/kg of body weight per day) should be used with caution and only if they are documented to be effective by 3-day fecal fat measures that indicate a significantly improved coefficient of fat absorption. Patients receiving higher doses than 6,000 lipase units/kg of body weight per meal should be examined and the dosage either immediately decreased or titrated downward to a lower range.</end quote> When Creon gained it's FDA approval, a Q&A sheet released addressed the risk of this as well. http://www.fda.gov/Drugs/DrugSafety/PostmarketDrugSafetyInformationforPatientsandProviders/ucm149337.htm

hmw · Aug 23, 2011

Oh, and when Emily was approaching a max dose of enzymes last year, adding Prevacid made a big difference for her too. She gained a few pounds and we saw an improvement in her stools.

Re. increasing for greasy stools~ in our case at least, I'd look at what else was going on with it. Most kids with CF are not going to have perfect stools, no matter how they take their enzymes. We now know Emily's 'normal' and about 2/3rds of the time she has poop that looks 'good.' Since she is also growing and gaining and not having GI distress, that is wonderful. If her stool started trending in the wrong direction AND started struggling with growth or having GI distress- I'd want a change asap.

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