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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slkanowitz | @slkanowitz | Aug 25 2:32am
In reply to @jkarmazin "Thanks for the prayers. They have now decided that I have chronic pancreatitis, which I am..." + (show)
@jkarmazin

Thanks for the prayers. They have now decided that I have chronic pancreatitis, which I am skeptical about as the radiologists all said that my pancreas looked fine. I have no symptoms of this disease, but they tell me some people don’t. They say that they see scarring. Other than my gut issues I consider myself to be a very healthy 70 year old. I take care of my 93 year old mother and my husband who has multiple serious conditions. I eat healthy and have 1 drink per day in the evening. I do have IBS and a tortuous redundant colon, and now EPI. Wish I felt more comfortable with this diagnosis. But I will say that AbbVie finally came thru with helping me with my Creon!!

Wondering if my husband and I should go to Mayo Clinic for second opinion on our diagnosis.

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It’s true that you can have chronic pancreatitis without any symptoms. It is often autoimmune. It can become symptomatic at any time and should be taken seriously. Alcohol should be avoided and any medication you take should be checked as some medications cause pancreatitis as a side effect. Blood tests (amylase and lipase) are usually elevated. I am wondering if you have had those checked, as that would confirm that you do have it. Is your doctor a gastroenterologist? That would be the appropriate specialist to consult about this diagnosis.

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jkarmazin | @jkarmazin | Aug 25 7:48am
In reply to @slkanowitz "I have EPI and use a OTC pancreatic enzyme that is almost identical to Creon and..." + (show)
@slkanowitz

I have EPI and use a OTC pancreatic enzyme that is almost identical to Creon and Zenpep from Vital nutrients available on Amazon. Be sure to check the fine print on label to verify the lipase units (around 39,500) if I recall correctly. It is about $80 and works well for me. It is the lipase that’s most important for fat digestion.

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I was going to use that one but if you look at the measurement on it is in HUT, where Creon is USP units. One HUT = 6.5 USP.

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penelope52 | @penelope52 | Aug 25 9:13am

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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1 reply
jkarmazin | @jkarmazin | Aug 26 5:10am

I looked at those and the difference is that amounts of the three enzymes are expressed differently. The Vital nutrients is written in HUTS and the Creon is in USP Units. 1 HUT =6.5 USP Units. I am currently trying Micraziym also from Amazon. AbbVie is going to help me with the Creon. But it is going to be 10 days before I get them so, am trying these instead.

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1 reply
rka19 | @rka19 | Aug 26 10:09am
In reply to @penelope52 "If you are on Medicare (supplement), do you mind if I ask which insurance carrier you..." + (show)
@penelope52

If you are on Medicare (supplement), do you mind if I ask which insurance carrier you have? The drug insurer I use charges me $663.00 per month and that's after I pay an initial $1,500.00 for first prescription. I would love $368. Thanks

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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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2 replies
penelope52 | @penelope52 | Aug 26 3:12pm
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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Seems EPI isn't a go-to diagnosis. I had an MRI, CT Scan, Blood work and doctor told me "there is one final test we can do by taking a tool sample", which is when my diagnosis happened. I had a vague discomfort under right ribs that wasn't constant, daily or even weekly, but I knew something was wrong and persisted.

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scottzee | @scottzee | Aug 27 4:56pm
In reply to @mari "I'd like to try them? Marian" + (show)
@mari

I'd like to try them?
Marian

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Hey there, how long have you been on this medication? I just want to confirm that you’re going to need this?

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1 reply
rka19 | @rka19 | Aug 28 9:22am
In reply to @jkarmazin "I looked at those and the difference is that amounts of the three enzymes are expressed..." + (show)
@jkarmazin

I looked at those and the difference is that amounts of the three enzymes are expressed differently. The Vital nutrients is written in HUTS and the Creon is in USP Units. 1 HUT =6.5 USP Units. I am currently trying Micraziym also from Amazon. AbbVie is going to help me with the Creon. But it is going to be 10 days before I get them so, am trying these instead.

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I have zero enzymes 36000 units is required. Going to ask my doctor to write me a script to order from Canada. Have mri tomorrow. I have numerous polyps in stomach covering pancreas and duodenum. Stop was ok as celiac and gluten. Much success

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jlmp | @jlmp | Aug 28 11:26am

Does anyone with EPI have the enzyme pills suddenly stop working? My texts showed zero Lipase and for a while two pills before a meal and sometimes one during a meal prevented diarrhea. Now they’ve stopped working. Do any of you take more pills with each meal and if so up to how many?

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mari | @mari | Aug 29 2:55pm
In reply to @scottzee "Hey there, how long have you been on this medication? I just want to confirm that..." + (show)
@scottzee

Hey there, how long have you been on this medication? I just want to confirm that you’re going to need this?

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Oh yes, I have Pancreatic Insufficiency. I've been diagnosed with Many tests.
and Scans.

I need Vital 3 times a day Or Else!
I was given physician samples of Zenpec. It work great. but, too expencive.

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