1. < Digestive Health

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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darb | @darb | Oct 25 12:00pm
In reply to @slkanowitz "I am sorry your EPI has had such a negative impact on your life! I am..." + (show)
@slkanowitz

I am sorry your EPI has had such a negative impact on your life! I am not aware of any link to Covid vaccines, but there’s so much we don’t know yet about the effects of both Coving infections and vaccination.
I am wondering if your lack of response to Creon is inadequate dosing. My understanding is that some people can require up to 15 caps a day: 3 with each meal and rwo with each snack. I am lucky in that 1 cap for lunch and dinner each controls my symptoms fairly well. Have you been checked for bile acid malabsorption? It’s possible that anoproblem coexists causing the diarrhea. It often occurs in people who have had gallbladder removed. The National pancreas foundation has good information on EPI and the dietary restrictions that help. I hope you get better control so your quality of life improves! It’s a learning process, sometimes lengthy, to manage this condition. A good dietitian might help as well. Hang in there and keep reading posts on EPI on this site. Experienced people with valuable information!

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My Creon has been increased to 24,000 units, taking 3-4 per meal and 2-3 for snacks. That still didn't do a whole lot, but I have recently been prescribed Colestipol 1GM tablets, and taking 2 tablets twice a day. I started it October 14th. This might be actually working, so far. I still have significant discomfort on the upper right side, But I have had a "normal" BM for the past 5 days. The doctor felt like I was experiencing BAM (Bile Acid Malabsorption). I do not have a gallbladder. He also recommended that I lean into a FODMAP diet. Fingers crossed.

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volleyballfan | @volleyballfan | Oct 29 10:38am

Conflicting information on diet. Should you eat tight fiber or low fat.

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1 reply
volleyballfan | @volleyballfan | Oct 29 10:39am
In reply to @volleyballfan "Conflicting information on diet. Should you eat tight fiber or low fat." + (show)
@volleyballfan

Conflicting information on diet. Should you eat tight fiber or low fat.

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Sorry, should be high fiber or low-fat diet for EPI

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waterlilly | @waterlilly | Oct 30 2:07pm

My understanding is you should be on a low-fiber diet.

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creondave | @creondave | Nov 1 12:18pm

The fodmap and Rosemay oil did wonders for me after I added it to my regiment of Creon. Good luck.

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dgzajic1252 | @dgzajic1252 | Nov 2 8:28am

I am a retired senior and applied to their patience assistance program and was approved for non cost for a year. But Vitals pancreatic enyzmes are very equivalent at 39.00 for a bottle of 90. I used them successfully before beginning creon.

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dgzajic1252 | @dgzajic1252 | Nov 2 8:33am

These work. I took these before getting approved for creon patient assistance.

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bronislava | @bronislava | Nov 4 3:23pm

Better help than elsewhere. Patients living with it. Thanks.

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rka19 | @rka19 | Nov 4 7:10pm
In reply to @rka19 "I have AnthemBCBS. My Creon costs $647 per refill. I have no enzymes ass my pancreas..." + (show)
@rka19

I have AnthemBCBS. My Creon costs $647 per refill. I have no enzymes ass my pancreas is non functioning. I filled an appeal but have yet to back. My deductible is also ass yours. I guess I’m stuck too. It took 5 doc and 3 years before EPI was identified. I had to insist on the blood draw that covers EPI. Sad

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Anthem BCBC hmo ppo
I’ve been waiting to see if Abbvie can help me with some of the cost. We are sad, yes we are. Thanks for sharing. My appeal was denied. Donut hole and was told I needed prior authorization. Hang in there.
Rebecca

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1 reply
slkanowitz | @slkanowitz | Nov 5 7:49am
In reply to @rka19 "Anthem BCBC hmo ppo I’ve been waiting to see if Abbvie can help me with some..." + (show)
@rka19

Anthem BCBC hmo ppo
I’ve been waiting to see if Abbvie can help me with some of the cost. We are sad, yes we are. Thanks for sharing. My appeal was denied. Donut hole and was told I needed prior authorization. Hang in there.
Rebecca

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The Vital nutrient pancreatic enzymes do work.! Both my sister and I have EPI and take these successfully. Just be sure to check the back label for lipase dose of around 36500 units. Amazon has these. I take 2-3 a day with meals but you can take more if needed. Staying away from fried and fatty foods helps. It took me a long time to get this figured out. You will feel better! Hang in there. 😀

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