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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

andinatalie | @andinatalie | 4 days ago

In reply to @dlydailyhope "@andinatalie I don’t believe registered dietitians are able to clinically diagnose. They have a bachelors degree..." + (show)

Hello!
Thanks for your reply. Yes, I’ve been seeing a GI over the course of 12 years. Everything they’ve test me for came back “normal”. I’ve had 3 colonoscopies, an endoscopy, blood work, fecal tests, etc. I don’t have chrones, celiac, lactose intolerance, colitis, etc. the diagnosis was always just IBS.

I’ve worked with an endocrinologist since 2014 when my diagnosis for hypothyroidism changed to hashimotos. I’ve never seen a rheumatologist, but my GP diagnosed me with rayneauds. Nothing official about my liver or pancreas, except that the enzymes are the only thing over the course of 32 years that have helped my symptoms improve, suggesting that I don’t have enough enzyme production on my own.

andinatalie | @andinatalie | 4 days ago

The only over the counter one I’ve tried is the one I mentioned which has much less USP than prescription.

Lisa Lucier, Moderator | @lisalucier | 4 days ago

In reply to @andinatalie "Hi everyone! After 32 years I was finally diagnosed by a Registered Dietitian (even though my..." + (show)

Hi, @andinatalie, and welcome to Mayo Clinic Connect. You will note I moved your post here so that you can connect with others such as @cmhgiddy24 @creondave @psnead @marylandbob @cc8 and others who have been talking about EPI (Exocrine Pancreatic Insufficiency):

- Does anyone have EPI (Exocrine Pancreatic Insufficiency) https://connect.mayoclinic.org/discussion/does-anyone-have-epi-exocrine-pancreatic-insufficiency/

When will you start the new medication? How is the bloating today?

lkcwhitten | @lkcwhitten | 2 days ago

I had a EUS (esophagus sonogram with endoscope) to confirm my EPI/pancreatitis and rule out cancer. I agree with the previous comment regarding finding a new gastrointestinal Dr. I started taking ZenPep but they were too big for me to swallow so we switched me to Creon.
Much better. Adjusting the dosage is very common so try not to get discouraged. Your dietician can help you with the vitamins you will need. I had the same results on my fecal. Please request a sonogram as an endoscope alone isn’t enough. I have cysts and atrophy of my pancreas so I need to be proactive. I hope this helps you!