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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@frannee

My CREON prescription is about to run out. The pharmacy is out of stock. Can I substitute Vital enzymes until I pharmacy obtains more CREON? The VITAL ones are not enteric coated. Does that mean they will dissolve before reaching pancreas?

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I put in a refill order for my Creon on 12/26. There was a low stock issue with the manufacturer and I just received my order on 1/10.

Here is the difference between the enteric coated Rx brand and the non-enteric coated OTC brands like Vital Nutrients:

The enteric pancrealipase has some is coated so it becomes activated after 30 minutes. This is to provide adequate availability of enzymes throughout the meal.

The non-enteric coated brands become active in the alkaline pH of the intestine and will last 15 minutes. The OTC brand generally contain less lipase than the Rx brands so it is likely more capsules may be required for optimizing. And with taking multiple capsules, stagger the time in dosing. This will ensure sufficient enzymes when eating meals longer than 15 minutes. I’ve talked with both Registered Dietitians and patients using OTC brands and find them equally effective in performance and significantly cheaper than Rx brands.

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@stageivsurvivor

I put in a refill order for my Creon on 12/26. There was a low stock issue with the manufacturer and I just received my order on 1/10.

Here is the difference between the enteric coated Rx brand and the non-enteric coated OTC brands like Vital Nutrients:

The enteric pancrealipase has some is coated so it becomes activated after 30 minutes. This is to provide adequate availability of enzymes throughout the meal.

The non-enteric coated brands become active in the alkaline pH of the intestine and will last 15 minutes. The OTC brand generally contain less lipase than the Rx brands so it is likely more capsules may be required for optimizing. And with taking multiple capsules, stagger the time in dosing. This will ensure sufficient enzymes when eating meals longer than 15 minutes. I’ve talked with both Registered Dietitians and patients using OTC brands and find them equally effective in performance and significantly cheaper than Rx brands.

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Great information - thank you!! I've been taking Creon with full meals and the Vital Nutrients supplement with snacks to preserve the very expensive Creon. So far, so good!

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@debhammel

Great information - thank you!! I've been taking Creon with full meals and the Vital Nutrients supplement with snacks to preserve the very expensive Creon. So far, so good!

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That sounds like a good method in using the two based on a meal or snack. Makes a lot of sense, cost and performance effective.

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@stageivsurvivor

That sounds like a good method in using the two based on a meal or snack. Makes a lot of sense, cost and performance effective.

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I’m severely lacking in Lipase and have been googling OTC enzymes without much luck in finding a Lipase-loaded one. Does anybody know of one?

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@jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

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Vital pancreatic enzymes OTC(amazon) has 36500 units lipase compared to Zenpep Rx 40000 u and Creon Rx 36000 u. Rx ones are delayed release and considerably more expensive. I took the Rxs initially but have transitioned to the OTC Vital and am doing well with it. A low fat diet helps a lot too!

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@stageivsurvivor

I put in a refill order for my Creon on 12/26. There was a low stock issue with the manufacturer and I just received my order on 1/10.

Here is the difference between the enteric coated Rx brand and the non-enteric coated OTC brands like Vital Nutrients:

The enteric pancrealipase has some is coated so it becomes activated after 30 minutes. This is to provide adequate availability of enzymes throughout the meal.

The non-enteric coated brands become active in the alkaline pH of the intestine and will last 15 minutes. The OTC brand generally contain less lipase than the Rx brands so it is likely more capsules may be required for optimizing. And with taking multiple capsules, stagger the time in dosing. This will ensure sufficient enzymes when eating meals longer than 15 minutes. I’ve talked with both Registered Dietitians and patients using OTC brands and find them equally effective in performance and significantly cheaper than Rx brands.

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Hi all,
I was diagnosed with sever EPI after months of tests and losing weight, stomach aches, and diarrhea. I started on Creon..... which was Ok....but I switched to PURE (Brand) PANCREATIN Enzymes...and (PURE)Ultra Digestive Enzymes. They have worked fabulously ...but if I eat heavy foods and lots of sweet (Chocolate), I definitely pay the price. I brought them to my GI doctor and she was impressed and said I could take these instead of Creon. I have never taken any kind of enzymes before...I thought I had IBS! The enzymes have made a world of difference.

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@jlmp

Diagnosed one week ago and SO many questions. Prescribed very expensive Zenpep. Can I eat as normal while taking these capsules? Need info on dosing, foods I can eat without dosing, etc. Doctor no help with this. He just says take one capsule before a snack and two before a meal.

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Wonderful! Thank you so much. I have ordered from Amazon. After I’ve substituted the pricey Zenpep with the Vital enzymes, I will update.

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I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

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@taftst1

Zenpep? Had that years ago. It’s to bulk up stools. You must have gastro problems. Had Creon too I think, years ago. Zenpep helps you digest and get nutrients out of food.

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ZENPEP is not to bulk up stools, it adds the missing enzymes back into your system so your body can break the food down so it can be absorbed. The by-product is that your stools are bulked up because the food has been broken down and is being used properly.

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@geegeebabe

I’m on ZENPEP. Medicare doesn’t cover Creon. Worked great for the first 3-4 months, now I’m back where I started. Hard to get hold of my doc and he seems indifferent to helping me. From what I have seen, most Gastroenterologists seem to lack any empathy for their patients. I had a great one years ago, he was the top world wide doc in the field. He treated my sister for severe Crohns issues. He called her his miracle child. I also saw him for GI issues. He had a great bedside manner, was patient, informative, and gentle. Unfortunately, he’s retired now. I wish I could find someone like him. The guy my sister goes to now is different than my doc, but she says the same thing I do, he’s not very good. I have seen so many complaints about doctors not being empathetic at all. I don’t know if it’s because they have too many patients with issues, or if they just don’t give a damn. I wish you the b3st of luck.

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I was diagnosed 6 months ago and have the same kind of gastroenterologist. I am now driving three hours to a new doctor and clinic. I’m low in all three major enzymes, with lipase being extremely low. Zenpep works great but it is terribly expensive. I found a pancreatic enzyme medication that works exactly the same for me. It is Vital Nutrients Pancreatic Enzymes. It costs $38.

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