New to exocrine pancreatic insufficiency (EPI): What helps?

After my husband had a Whipple surgery, he was put on creon. I picked up the first prescription in April 2018 and it was $40 (yes, really). When I went back for a refill it was over $800. By the time Jim died in May 2020, it was over $2000 after insurance. I had unopened bottles of Creon I hated to toss in a prescription pill throw away bin at CVS. So I looked on line to see if I could donate it anywhere. The state of Wyoming has a prescription pill return where you can donate unopened and sealed pills so I sent $8000 worth of Creon pills there and they accepted them. I don't know what happened between our first fill at Kmart until the next time. The patents for the drug will expire in 2024-2034.

I too have just been diagnosed with EPI and have been put on Creon. Don’t quite know how to navigate this new world🤪🤪🤪
I’m planning a trip to France in May & am scared I can’t to it! And hints?

Wow, I'm in the same boat. Diagnosis made for a sad Valentine's Day, as this is added to my 15 years of lymphocytic microscopic colitis. Enough already!

Happy that my new gastro doc identified this, but scared as hell.

I'd like to add my welcome, @sqlgirl13. I love your picture and hope you'll add it to your profile.

It is sad and scary to get a new diagnosis of exocrine pancreatic insufficiency (EPI). In addition to the helpful replies you got from @gardenlady1116 and @nonnie9153, I'm tagging other EPI members like @7judy2 @stageivsurvivor @lon @irr4et @dia2ne @kamama94 @jenatsky @anniegk @ruble429 @mialeigh @carolannd to join this discussion.

You may also be interested in this related discussion in the Digestive Health support group:
- New to exocrine pancreatic insufficiency (EPI): What helps? https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/

Back to you sqlgirl, how are you doing on Creon? Has it helped? What questions do you have about what to expect?

I have been getting for a $35 monthly copay. I have a Medicare part D plan with Wellcare. I am not sure how this works, but it is being covered by my Medicare part D plan.

How do you afford Creon ?? I was told I make $200/year too much for the corporate grant. I take natural digestive enzyme supplements and do well. I think if I had the cost of Creon looming over me … the stress would prevent the Creon from working.

Creon has become my best friend although it took a few step ups to get the right dosing

I'm taking CREON with new diagnosis of severe EPI, sad about this and scared.

Thank you for posting this information. I will try especially staggering during a meal.

After I was prescribed Creon at a starting dose of 24,000 lipase units, I optimized the amount I needed for a specific meal by keeping a daily food journal. The starting dose was calculated using the formula provided by the manufacturer which is based on the patient following the recommended diet predominantly non-fat and low fat. Although the dosing calculator Abbvie has saying for my body mass (120-130 lbs), I should take one 36,000 capsule, the 24,000 capsule has been satisfactory for most meals as I stick to non-fat and low fat fairly consistently.

By keeping a daily food journal noting day/time, type of meal, quantity and fat content and then noting the GI symptoms and stool characteristics 24-40 hours later (the time it takes for food to be digested and excreted by an adult), I quickly identified what meals (fat content, portion size) required more pancrealipase. It did take long to optimize as I kept to a consistent diet the first month. Slowly I began increasing the quantity of type of foods which included some additional fat. Already having a good idea of what was working, it became easy to extrapolate when to add more pancrealipase capsules to keep the GI tract functioning normally.

An oily sheen and stickiness of the stool is likely caused by undigested fats indicating more enzyme is likely required. When taking capsules, I take my first capsule immediately Before or after the first bite and then stagger taking additional capsules throughout the meal. This keeps a consistent level of enzymes in the intestine available to digest the target substrate (carbohydrates, fats, proteins). By staggering, it more closely resembles how a fully-functioning pancreas works which produces and secretes enzymes in response to food entering the intestine and sending a signal to the pancreas by way of releasing a hormone that binds to receptors in the pancreas that more enzymes are needed.

If optimizing by increasing the number of capsules to the maximum suggested by the dietitian is not achieved, the manufacturers and dietitians suggest trying a different Rx brand. Although all the Rx brands are derived from porcine pancreas, they differ in performance within and between individuals as a result of how the enzymes are extracted, processed, purified, concentrated, the time-release coating used and binders and fillers added. For these reasons, one should evaluate different brands if the first one does not perform optimally. I also stick to recommendations of PanCan.org and dietitians of avoiding fats, red meat in moderation and the vegetables that are hard to digest.
https://letswinpc.org/managing-pancreatic-cancer/2019/10/09/pancreatic-enzymes-explained/
https://flatulencecures.com/vegetables-that-cause-gas/
http://media.pancan.org/pdf/patient-services/booklets/Diet-Nutrition-Booklet-Digital.pdf