Does anyone have EPI (Exocrine Pancreatic Insufficiency)?
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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Thanks for this, very helpful.
RJ Coach, Do you know what your elastase level was? The lower it is, it would make sense the higher the dose of Creon you need. There’s also a possibility that you might have another digestive problem like Bile Acid or a coexisting food intolerance like gluten or lactose contributing to the problem. I would ask your GI dr to consider and test for any other issues that could cause your symptoms if that hasn’t already been done. Good luck and let us know what you find out please. We are all learning from one another here. Since you live in the south have you considered Mayo in FL or AZ?
I started out taking 11 creon a day in 2017 after diagnosis of EPI. I learned to stay away from lettuce and dairy foods. Carbs do well. I still have problems from time to time but I hardly ever take creon now. I hope you can learn to cope with this disease. It may get better.
The amount of Creon needed is not so much the current elastase level of an individual but more of the ingredients and the quantities of a meal. This is why the recommendation of Registered Dietitians and the manufacturers is to calculate the amount of carbohydrates, fats and protein in a given meal to optimize dosage. This is made easier using the on-line dosage calculator at https://digestthis.ca
Thanks for that link. I try to keep my fat intake low and somewhat consistent but I will check this out!
I love this site. Nothing like the actual lived experiencce of patients to provide helpful information. I was not aware Creon did not treat all foods equally, as far as digestion. Thanks for this info. I see my dietitian in a few weeks and will discuss this with her. Going to the online calculator, thanks for posting that.
I could use them
$1100 For me!
Do you have leftovers?
Thank you for your suggestions. Trying to figure out all of these foods. Creon has not helped so far. Doesent seem to matter what I eat. Lost about 25 pounds but it has leveled off.
I tried to get in Mayo Jacksonville. I have been there for Prostate issues. They said they could not accept any new patients in Gastro dept. I contacted Mayo in Rochester because they have pancreatic department. I am going in November. It is going to be an expensive trip from where I am. I hope they can help me. Got to try something.
Thank you for the information regarding information on FB!