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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I don’t know. I’m
New here but it sounds like an imperative questions for our physicians! Thx!
So sorry to hear this. It’s all so complicated. I got another diagnosis too. Ow. However it’s more minor than yours I believe. Wishing you good medical care and hopeful future stabilized health.
Are you serious, $12.00 for three months?
Pancreatitis becoming chronic is a risk factor in developing pancreatic cancer, not EPI itself. Those that have cystic fibrosis have EPI but also some may have acute pancreatitis. Those that are not careful in watching their diet to prevent acute attack of pancreatitis and let the condition develop into its chronic form are at greater risk of developing pancretic cancer.
Please tell us your insurance or How is it that cheap?
Following
I dx'd myself with EPI after accidentally happening upon a podcast meant for gastroenterologists. I then told my GI doc that I ticked all the boxes for EPI and she agreed to have me try out Zenpep (samples), which worked immediately! With Medicare and my insurance, I have to go through 30 days of taking the successively more expensive drug before they will cover Zenpep. I'm currently on my fourth one and the problem has gotten worse, mainly the severe pain after ingesting ANYthing; so I skip eating for a day or two to allow my digestive system to calm down. Yes, I take the meds with snacks/meals, and sometimes I'm able to eat a meal without pain every few days or so. My main problem is that my labs have always shown false negatives (one of my sons has the same problem) and I've rarely had a doctor or nurse practitioner who was wise enough to treat my symptoms rather than taking the lab results as the have-all, be-all.
My doctor has given me no instructions/suggestions on changing my diet, just the pancreatic enzymes, so my worsening symptoms are probably due in part to me consuming what I have always consumed.
Most of what I learned was from reading on the internet and trial and error. Also, the digestive enzymes can cause low/high glucose, so watch for that. Good luck.
You might need another Dr. Not all of them are up on this disease. We have to educate ourselves to be our own advocates. This forum and others have been helpful to me!