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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darb | @darb | Oct 6 9:52am

In reply to @slkanowitz "I’m sure they do. You definitely need a good GI consult at a specialty level clinic..." + (show)

Recommendations? I live in Michigan, but might consider traveling to outlying states.

darb | @darb | Oct 6 9:59am

In reply to @penelope52 "How much Creon do you take, per meal? My prescription is two capsules, 36,000, per meal..." + (show)

I take 2-4, 24000 USP of Lipase units per meal, depending on the size of the meal or how long I am eating it.... That comes out to 48000-96000, per meal.

geegeebabe | @geegeebabe | Oct 6 12:30pm

In reply to @darb "I have been diagnosed with EPI. I have had ongoing problems for 2-3 years now. Creon..." + (show)

EPI can be idopathic, meaning there is no known cause for it. Many of us are in that situation. As for the life obstruction, I understand, most of us are in the same situation. Are you on any type of PERT, like ZENPEP or Creon? You need to stay in contact with your doctor and let him/her know you are still having problems. It often takes a while to get the dosage right, and even then you can still have issues despite taking enzymes. As you get to a better dosages, you will find that you have more good days than bad. However, you have to remember that this is not a medication to get rid of your symptoms, rather a replacement therapy for something your body no longer makes. Just as in the past, prior to having EPI, you can sometimes feel sick after a meal. It depends on how much fat, protein, sugar, etc. you put in your body. Each person is different, and their body will react differently to foods, than another person with EPI. I find that ginger tea and probiotics help to keep my gut feeling better. There is no miracle cure for this, it will take time and patience to figure out how to best deal with this.

slkanowitz | @slkanowitz | Oct 8 3:44pm

Mayo clinic in Rochester, Cleveland Clinic? I would check your local university hospital clinic first. Most require a referral from your pcp or specialist.

rjcoach1951 | @rjcoach1951 | Oct 10 11:46am

Are there any Pancreatc specialist closer to the South. Rochester is a long trip from Georgia.

jkarmazin | @jkarmazin | Oct 11 6:59am

Does anyone with EPI also have a Tortuous and Redundant Colon and IBS?

penelope52 | @penelope52 | Oct 12 8:35am

In reply to @rjcoach1951 "Are there any Pancreatc specialist closer to the South. Rochester is a long trip from Georgia." + (show)

Check with Emory in Atlanta; they are a teaching hospital and may be able to direct you. Mayo has a location in Jacksonville.

slkanowitz | @slkanowitz | Oct 12 9:13pm

In reply to @jkarmazin "Does anyone with EPI also have a Tortuous and Redundant Colon and IBS?" + (show)

Jkarmazin, I have EPI and Redundant colon, Probably IBS also. I don’t know if the three are related. It’s quite the balancing act to juggle the diarrhea from EPI constipation from Redundant colon, And who knows where the IBS fits in? Not a fun trio!