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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sunshine29 | @sunshine29 | 4 days ago
In reply to @sunshine29 "I have this & am taking a new drug called Creon that has really helped me...." + (show)
@sunshine29

I have this & am taking a new drug called Creon that has really helped me. However, it is very expensive, so had to apply for assistance from Angie , which I got. Really helps.

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Company for Creon is Abbvie.

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sunshine29 | @sunshine29 | 4 days ago
In reply to @lisalucier "Hi, @sunshine29 - thanks for sharing your experience with pancrelipase (Creon). Are you saying you applied..." + (show)
@lisalucier

Hi, @sunshine29 - thanks for sharing your experience with pancrelipase (Creon). Are you saying you applied for and received assistance from AbbVie, the manufacturer of this medication?

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Yes. I applied for assistance and got it. They now ship to me free. Had to fill out form& my Dr had to answer their questions. It has definitely helped slow my output.

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creondave | @creondave | 3 days ago
In reply to @marylandbob "Hi I have the EPI which requires Creon - expensive. In addition to that, I have..." + (show)
@marylandbob

Hi
I have the EPI which requires Creon - expensive. In addition to that, I have developed SIBO (small Intestinal Bacteria Overgrowth. I think the two are related, with the SIBO creating the problem of constipation, diarrhea and lots of gas. That leads to trying to defeat the SIBO problem with expensive antibiotics. The antibiotics fixes the problem in the short run, but it comes back. I have not found a long term solution and I’m trying to work through fighting the SIBO. Sorry but I don’t have a good solution for you. There are other other enzymes pills etc but they are very weak compared to what I need for the EPI, thus I’m still on Creon.

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Did you try being on a VERY strict Low FODMAP diet? It helped immensely. I am having improvement with 6 meals a day, but the hardest part is staying down at 1600 calories, as well as small portions. It is easy to eat too much of something and have issues, as you described. I am on Creon as well, and take one dose with each meal. There is still some gas/constipation/diarrhea overflow, but the improvement is significant for now, fingers crossed.

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choosejoy | @choosejoy | 2 days ago
In reply to @blessedwildapplegirl "I think I might have SIBO as well. I’ve been doing some research for it, and..." + (show)
@blessedwildapplegirl

I think I might have SIBO as well. I’ve been doing some research for it, and it looks like oil of oregano is as effective as antibiotics, and in some cases more effective. Have you ever tried that? I haven’t been diagnosed with it officially, but I’m almost positive that’s what I have. Apparently the oil is quite strong and you’re supposed to be under a doctor’s care when you use it and make sure you get the right kind of course, but it sounds intriguing to me. Good luck.

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You can ask your GI doc to order a hydrogen breath test to diagnose SIBO. There are 3 different types (I believe) and the test can differentiate them. This is how I was diagnosed. I am having a hard time getting past SIBO tho. I am currently on long term antibiotics though, which I know you don’t want to have to take.

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cmhgiddy24 | @cmhgiddy24 | 2 days ago

Hi I have EPI after having pancreatic neuroendocrine cancer and surgery and have now been on Creon for almost 3 mos., which has helped me significantly! I don't know how old you are, but I am on Medicare. I now have an AARP Medicare RX supplement through UnitedHealthcare that has covered the whole cost of Creon this year for me. I've had some other RX expenses to where the Medicare $2000 RX cap has been met (see https://www.panfoundation.org/understanding-the-medicare-part-d-cap/), but I think without that, my cost would have been $136 co-pay for my initial first 90 day supply, then $0. So, if you're on Medicare, you might at least want to check this out for next year. Hope this info is help!

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cmhgiddy24 | @cmhgiddy24 | 2 days ago

PS I almost forgot. ..Also check out Healthwell Foundation https://www.healthwellfoundation.org/about/what-we-do/. They provide financial assistance through grants for certain chronic diseases. Walgreens told me about them and I got grant approval thru them for another med I'm on. The diseases are listed https://www.healthwellfoundation.org/disease-funds/.

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blessedwildapplegirl | @blessedwildapplegirl | 2 days ago
In reply to @choosejoy "You can ask your GI doc to order a hydrogen breath test to diagnose SIBO. There..." + (show)
@choosejoy

You can ask your GI doc to order a hydrogen breath test to diagnose SIBO. There are 3 different types (I believe) and the test can differentiate them. This is how I was diagnosed. I am having a hard time getting past SIBO tho. I am currently on long term antibiotics though, which I know you don’t want to have to take.

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I have a zoom appointment with a naturopathic doctor tomorrow, so I’ll ask him about that. I can’t believe my regular doctor didn’t order that for me. Yeah, I wouldn’t be able to take long-term antibiotics because I always become allergic to them, but I have read there are herbal remedies that are almost as effective. I hope so. It sounds like it’s a difficult thing to get rid of. I hope you get some relief! Thanks so much for the info.

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