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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I was recently diagnosed with Exocrine Pancreatic Insufficiency (EPI) and my doctor prescribed the prescription enzymes, Creon 24000. However, even with my insurance, my copay would be $851 per month! So I did some research and found one company that makes a functionally equivalent, over-the-counter version of Creon. This product is called "Micrazym 25000 USP." It is manufactured by AVVA Pharmaceuticals Ltd., which is based in Europe and is now available on Amazon.com at a current cost of less than $50 for a 50 capsule box. (See link to this product at https://www.amazon.com/dp/B07GWJ3QJK?ref=nb_sb_ss_w_as-reorder_k0_1_9&amp=&crid=O64SFPYT0MSI&amp=&sprefix=micrazyme).

For the past month, I have been taking Micrazym with each meal and snack, as a substitute for the prescription Creon, and I have found it to be very effective. Specifically, I've found that it has eliminated the constant, low-grade nausea I had been experiencing, and it has significantly cut down on the near-constant episodes of diarrhea I had been plagued with every day (and became housebound as a result of) for the eight months prior to getting diagnosed with EPI. I will add that over many years prior to my EPI diagnosis, I had tried countless other digestive and pancreatic enzyme formulas, but I found only very limited relief from my steadily increasing digestive and intestinal problems (i.e., upset stomach, constipation, diarrhea, nausea, terrible gas, sharp pains on the left side of my abdominal area, ileocecal valve problems that caused pain in my right abdominal area, and other issues.)

Therefore, in my efforts to verify the authenticity and efficacy of Micrazym pancreatic enzymes, I did further research on the company making it. As a result, I came across an article describing a legal challenge that was eventually won by AVVA concerning Micrazym. In summary, the article stated that in January 2024, a member state of the EU challenged AVVA's research studies showing that Micrazym behaves in the same way as the authorized medicine, Creon, which also contains porcine pancreas enzymes in gastro-resistant capsules, and for which adequate data on safety and efficacy had already been documented in the literature. The European Medicine Agency (EMA) Committee for Medicinal Products for Human Use (CHMP) was then called in to conduct an indepth review of AVVA's research, and it subsequently ruled that AVVA had provided sufficient evidence to show that the release of Micrazym in the intestines is comparable to that of Creon. Therefore, on May 16, 2024 the European Commission issued an EU-wide, legally binding decision authorizing the legal marketing of Micrazym for those with EPI based on the evaluation of the currently available data. (For exact
references and details, please see: https://www.ema.europa.eu/en/medicines/human/referrals/micrazym-associated-names).

With this reassurance in mind, I decided to try Micrazym. While not a perfect "fix" for all the symptoms EPI has caused me, my experience with this product has been very positive, and I intend to keep using it. I sincerely hope that my experience will be helpful to you and to anyone else struggling with EPI.

REPLY
@darb

Along with an increase in Creon, I have been put on Colestipol 1M/ 2 tablets twice daily. THIS seems to be helping immensely. It's been suggested that I have EPI with BAM. I have had 12 days straight with no diarrhea. However it is still too early to determine if this is the magic combination. Fingers crossed. I am still having significant discomfort in the right upper quadrant (under rib cage) that radiates into back. Will keep everyone in this forum posted.

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It has been a few weeks now since I was prescribed Colestipol 1M/2 tablets twice daily. OMG! What a difference. It's still not perfect, but it has been a game changer. I am still on Creon. I have an appointment with my gastrologist this afternoon to further discuss my medications and symptoms. There just might be hope for me. *Fingers crossed!*

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I also have constipation first, then 3 liquid explosive with low belly cramps. At least I’m not this way everyday. Thank you all.

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@darb

It has been a few weeks now since I was prescribed Colestipol 1M/2 tablets twice daily. OMG! What a difference. It's still not perfect, but it has been a game changer. I am still on Creon. I have an appointment with my gastrologist this afternoon to further discuss my medications and symptoms. There just might be hope for me. *Fingers crossed!*

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So …I’m on Creon but I’m hearing you say there is another medication I could take in addition to Creon. Hopeful!

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@rka19

I also have constipation first, then 3 liquid explosive with low belly cramps. At least I’m not this way everyday. Thank you all.

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It’s rough, isn’t it? I just had a resurgence of all the painful symptoms and it kept me home for a
Week. I never heard of this
Disorder before. It’s quite challenging.

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So I’m
New to this chat group. Does anyone else get flare ups? It makes hard to plan activities.

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@icafe51

It’s rough, isn’t it? I just had a resurgence of all the painful symptoms and it kept me home for a
Week. I never heard of this
Disorder before. It’s quite challenging.

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Blessings from above.

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@icafe51

It’s rough, isn’t it? I just had a resurgence of all the painful symptoms and it kept me home for a
Week. I never heard of this
Disorder before. It’s quite challenging.

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After 3 years of having the wrong dx to deal with, answer is YES
The comes $614 for the medicine. I wish I cold just finish something and mark it off my list
Thanks

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@rka19

After 3 years of having the wrong dx to deal with, answer is YES
The comes $614 for the medicine. I wish I cold just finish something and mark it off my list
Thanks

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Wow. 3 years! Hard to imagine the wrong Rx. Sorry you had that experience! Thanks for sharing your info!

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@icafe51

So …I’m on Creon but I’m hearing you say there is another medication I could take in addition to Creon. Hopeful!

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Ask your doctor about Colestipol 1M/2 tablets twice daily. It has been a game changer for me. Research BAM. Bile Acid Malabsorption.

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