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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@jlmp

I’ve researched online and some sources say EPI increases the risk of pancreatic cancer. Does anyone have a definitive answer? And if there is a risk, would it make sense to have a scan every 6 months or so?

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I don’t know. I’m
New here but it sounds like an imperative questions for our physicians! Thx!

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@szelisk

I was given Zenprep Dr 40,000, and with insurance, I believe it was 12.00 for 3 months. Has it been cured, nope, but it has helped. Unfortunately, now they believe I have PSC as well (Primary Sclerosis Cholangitis) as well. I'm. hoping to have a definite diagnosis soon. Although, from what I have heard, there are really not very many ways to confirm.

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So sorry to hear this. It’s all so complicated. I got another diagnosis too. Ow. However it’s more minor than yours I believe. Wishing you good medical care and hopeful future stabilized health.

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@szelisk

I was given Zenprep Dr 40,000, and with insurance, I believe it was 12.00 for 3 months. Has it been cured, nope, but it has helped. Unfortunately, now they believe I have PSC as well (Primary Sclerosis Cholangitis) as well. I'm. hoping to have a definite diagnosis soon. Although, from what I have heard, there are really not very many ways to confirm.

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Are you serious, $12.00 for three months?

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@jlmp

I’ve researched online and some sources say EPI increases the risk of pancreatic cancer. Does anyone have a definitive answer? And if there is a risk, would it make sense to have a scan every 6 months or so?

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Pancreatitis becoming chronic is a risk factor in developing pancreatic cancer, not EPI itself. Those that have cystic fibrosis have EPI but also some may have acute pancreatitis. Those that are not careful in watching their diet to prevent acute attack of pancreatitis and let the condition develop into its chronic form are at greater risk of developing pancretic cancer.

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@nazleer

Are you serious, $12.00 for three months?

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Please tell us your insurance or How is it that cheap?

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@mari

Please tell us your insurance or How is it that cheap?

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Following

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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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I dx'd myself with EPI after accidentally happening upon a podcast meant for gastroenterologists. I then told my GI doc that I ticked all the boxes for EPI and she agreed to have me try out Zenpep (samples), which worked immediately! With Medicare and my insurance, I have to go through 30 days of taking the successively more expensive drug before they will cover Zenpep. I'm currently on my fourth one and the problem has gotten worse, mainly the severe pain after ingesting ANYthing; so I skip eating for a day or two to allow my digestive system to calm down. Yes, I take the meds with snacks/meals, and sometimes I'm able to eat a meal without pain every few days or so. My main problem is that my labs have always shown false negatives (one of my sons has the same problem) and I've rarely had a doctor or nurse practitioner who was wise enough to treat my symptoms rather than taking the lab results as the have-all, be-all.

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@penelope52

First you need to see a nutritionist who specializes/has experience with this issue. There is a lot of information on the internet. Your pancreas is not producing sufficient enzymes to digest the food in your stomach when eat, thus the Zen pep/Creon/Panarese, etc. In addition to the compromised digestion, which causes malabsorption issues, you possibly face nutrient deficiencies. My personal instructions were: include, daily, vitamins K/A/D/Coq10/E/B complex/Good multi. Most of these are absorbed better with some kind of oil in your meal. Even taking all these, I still had a ferritin (part of your iron) and B2 deficiency, which manifested in my tongue and it has taken three months of supplements for those to clear, not to mention the medical tests to rule out oral disease of some kind. The iron deficiency developed due to not eating beef or pork. You are advised not to eat pork or beef, as they are harder to digest than chicken and fish and can cause extra stress. I eat a lot of vegetables, dried beans, grains, avocado. Have found that raw vegetables. slaw, salad do not digest well for me, so I only eat cooked foods, or experience pancreas discomfort while the raw items digest. Eliminate processed foods - fast food, chips, candy cakes, canned soups, frozen foods, sugar, as little processed as possible. These have little nutritional value and are harder to digest. No fried foods. I use Daves Killer and Ezekial breads, as they (especially Ezekial) have more nutritional value (for store bought bread) than most of the others. If you aren't familiar with Ezekial it is found in the frozen section, due to lack of preservatives and I thaw, and keep, it in the refrigerator. I use Vegenaise instead of mayo, Violife plant butter and cook with only olive oil. Eat a lot of tune and salmon salad and have a vegetable soup I make and freeze, so I always have something on hand. Have a crustless quiche each day for breakfast, with broccoli, peppers and onions

All of this information is trial and error for ME and working with a nutritionist. I am also pre-diabetic, so my diet is a little more restricted on the carb side. This diagnosis can be overwhelming at first, as they all can, but when you start working with it, you will figure out what works best for you. Good luck and find a good nutritionist and read medical articles about this disorder.

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My doctor has given me no instructions/suggestions on changing my diet, just the pancreatic enzymes, so my worsening symptoms are probably due in part to me consuming what I have always consumed.

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@ceriselu

My doctor has given me no instructions/suggestions on changing my diet, just the pancreatic enzymes, so my worsening symptoms are probably due in part to me consuming what I have always consumed.

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Most of what I learned was from reading on the internet and trial and error. Also, the digestive enzymes can cause low/high glucose, so watch for that. Good luck.

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@ceriselu

I dx'd myself with EPI after accidentally happening upon a podcast meant for gastroenterologists. I then told my GI doc that I ticked all the boxes for EPI and she agreed to have me try out Zenpep (samples), which worked immediately! With Medicare and my insurance, I have to go through 30 days of taking the successively more expensive drug before they will cover Zenpep. I'm currently on my fourth one and the problem has gotten worse, mainly the severe pain after ingesting ANYthing; so I skip eating for a day or two to allow my digestive system to calm down. Yes, I take the meds with snacks/meals, and sometimes I'm able to eat a meal without pain every few days or so. My main problem is that my labs have always shown false negatives (one of my sons has the same problem) and I've rarely had a doctor or nurse practitioner who was wise enough to treat my symptoms rather than taking the lab results as the have-all, be-all.

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You might need another Dr. Not all of them are up on this disease. We have to educate ourselves to be our own advocates. This forum and others have been helpful to me!

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