Does anyone have EPI (Exocrine Pancreatic Insufficiency)?

Posted by slkanowitz @slkanowitz, Oct 15, 2023

The prescription enzyme I take is 368.00 a month copay. Without insurance it is over 2000.00 a month! I’m looking for an affordable over the counter pancreatic enzyme with comparable lipase dosage of 40,000 units. I would appreciate any suggestions, as the diarrhea caused by this condition is intolerable.

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I would look forward to receiving the meds.

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I just checked my bottle of Vital nutrients pancreatic enzymes and the lipase dose is 35,500 USP units. It’s 180 capsules and 2 a day, 1 with lunch and dinner, seems adequate for me but I know others may need more. My elastase test result was 58 (>200 normal) if that helps anyone. I get mine from Amazon but I think drugstores and grocery stores have this too. It’s currently 74.90 for 180. There are several products so be sure to look at the back of label to check dosage. There’s also a 5%discount if you subscribe and save.

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@slkanowitz

I just checked my bottle of Vital nutrients pancreatic enzymes and the lipase dose is 35,500 USP units. It’s 180 capsules and 2 a day, 1 with lunch and dinner, seems adequate for me but I know others may need more. My elastase test result was 58 (>200 normal) if that helps anyone. I get mine from Amazon but I think drugstores and grocery stores have this too. It’s currently 74.90 for 180. There are several products so be sure to look at the back of label to check dosage. There’s also a 5%discount if you subscribe and save.

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I am very fortunate as I now get my digestive enzymes prescribed from my doctor and insurance covers them.
I get triple what I need. Anyone taking Creon prescribed? Or in need? Any issues for those of you who take it?

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Diagnosed with EPI. Taking Creon 36000. 3 every meal for about 2 months. Have not seen any improvement. I see a Gastro doctor. Any advice on a second opinion to see a Pancreatic specialist at the Mayo in Rochester Mn. I live in the South. A long way away.

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I’ve been taking Creon for a few months, as a result of Crohn’s. My elastase test showed a level of 129. It has helped tremendously. Prior to taking, I had terrible odorous gas most of the day and oily diarrhea. I also lost 25 pounds since my third small bowel resection in April 2023. My symptoms have abated substantially. Creon is a miracle drug for me! I’m still having trouble gaining weight back, but at least I’m feeling good most days.

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@penelope52

Thanks for the reply. I sent this to my gastro for input. I don't know if Lipase is Lipase, is Lipase. I'm very curious why this would be $80 and Creon costs me $640, with insurance. Fingers crossed, all Lipase is equal and this will work for me. thank you, thank you.

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While all the OTC and Rx pancrealipase are sourced from porcine pancreas, the Rx brands use enteric coatings to control the time release of the microspheres of the amylase, lipase and protease. This is how the capsule contents provides coverage over 45 minutes. Non-enteric coated enzyme brands get activated immediately upon reaching the alkaline pH of the intestine and lose their activity after 15 minutes.

As was already pointed out in another post of this thread, manufactures use different units for reporting the enzyme concentration of lipase. The Rx brands tend to have a higher lipase concentration than the OTC counterpart.

Another difference is in order to have FDA approval, the Rx brands must meet or exceed rigid quality control standards including adhering to a tighter tolerance in variability of enzyme activity published on the label. Variation from what is published must be within +/- 10%. This adds manufacturing costs for adhering to FDA manufacturing guidelines.

The variability is a much wider range in OTC brands. This would be important with infants and adults following a limited, consistent diet where dosing is more critical.

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@stageivsurvivor

While all the OTC and Rx pancrealipase are sourced from porcine pancreas, the Rx brands use enteric coatings to control the time release of the microspheres of the amylase, lipase and protease. This is how the capsule contents provides coverage over 45 minutes. Non-enteric coated enzyme brands get activated immediately upon reaching the alkaline pH of the intestine and lose their activity after 15 minutes.

As was already pointed out in another post of this thread, manufactures use different units for reporting the enzyme concentration of lipase. The Rx brands tend to have a higher lipase concentration than the OTC counterpart.

Another difference is in order to have FDA approval, the Rx brands must meet or exceed rigid quality control standards including adhering to a tighter tolerance in variability of enzyme activity published on the label. Variation from what is published must be within +/- 10%. This adds manufacturing costs for adhering to FDA manufacturing guidelines.

The variability is a much wider range in OTC brands. This would be important with infants and adults following a limited, consistent diet where dosing is more critical.

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Thanks for this, very helpful.

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RJ Coach, Do you know what your elastase level was? The lower it is, it would make sense the higher the dose of Creon you need. There’s also a possibility that you might have another digestive problem like Bile Acid or a coexisting food intolerance like gluten or lactose contributing to the problem. I would ask your GI dr to consider and test for any other issues that could cause your symptoms if that hasn’t already been done. Good luck and let us know what you find out please. We are all learning from one another here. Since you live in the south have you considered Mayo in FL or AZ?

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@rjcoach1951

Diagnosed with EPI. Taking Creon 36000. 3 every meal for about 2 months. Have not seen any improvement. I see a Gastro doctor. Any advice on a second opinion to see a Pancreatic specialist at the Mayo in Rochester Mn. I live in the South. A long way away.

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I started out taking 11 creon a day in 2017 after diagnosis of EPI. I learned to stay away from lettuce and dairy foods. Carbs do well. I still have problems from time to time but I hardly ever take creon now. I hope you can learn to cope with this disease. It may get better.

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@slkanowitz

RJ Coach, Do you know what your elastase level was? The lower it is, it would make sense the higher the dose of Creon you need. There’s also a possibility that you might have another digestive problem like Bile Acid or a coexisting food intolerance like gluten or lactose contributing to the problem. I would ask your GI dr to consider and test for any other issues that could cause your symptoms if that hasn’t already been done. Good luck and let us know what you find out please. We are all learning from one another here. Since you live in the south have you considered Mayo in FL or AZ?

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The amount of Creon needed is not so much the current elastase level of an individual but more of the ingredients and the quantities of a meal. This is why the recommendation of Registered Dietitians and the manufacturers is to calculate the amount of carbohydrates, fats and protein in a given meal to optimize dosage. This is made easier using the on-line dosage calculator at https://digestthis.ca

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