EPI meds expense

@andinatalie
I don’t believe registered dietitians are able to clinically diagnose. They have a bachelors degree and dietitian license but limited in what they can do compared to a medical doctor.

Did your gastroenterologist do bloodwork, ultrasound, MRI, endoscopy and colonoscopy? Have they ruled out pancreatitis and any issues with liver or post gallbladder removal? Have they ruled out celiac disease?

Are you seeing an endocrinologist for Hashimoto’s and are you being treated for hypothyroidism? Are you working with a rheumatologist to see if you have any other autoimmune diseases contributing to your symptoms?

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.

Hi everyone!
After 32 years I was finally diagnosed by a Registered Dietitian (even though my GI tested me in 2021 and 2023 through fecal and blood tests, both yielded “normal” results) with Exocrine Pancreatic Insufficiency (EPI). I’ve started Now Super Enzymes and felt relief the same day! My bloating, gas and cramping drastically reduced. After 2 weeks, I’m starting to see bloating increase and I’m feeling discouraged! My GI prescribed Zenpep and I’m just waiting on my RD to agree to switch to Zenpep. Has anyone else delt with extreme bloating and have success with Zenpep? My RD is confident that if her hypothesis is correct and I do have EPI, I can live a symptom free life.
I also have hashimotos, rayneauds, and gallbladder removed.
Thanks!

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.

Is anyone else struggling with friends and family regarding changes to your diet? Many of my friends are 'Foodies' and it is difficult to get together because they are always focused on food and drink. This for me has been one of the most difficult issues with my EPI diagnosis.

I am fortunate that I've met my deductible ($10K) this year and my Creon is currently at $0 but that will probably change after the first of the year. It is RIDICULOUS how expensive life saving medication is. And this IS life saving medication. I am so sorry you have to deal with this.

There are some good over the counter options that seem to work well (AI recommended this one to me that I took before I filled the Creon: https://amzn.to/46TizgQ) - The Vital Nutrients blend is pretty close to Creon as far as covering a few different enzymes but it's not time released. The downside is you have to take them while you eat. So one at the first bite, one during the meal and one near the end of the meal. The Creon is time-released. I hope this helps. Sending you good thoughts!!!

Along with an increase in Creon, I have been put on Colestipol 1M/ 2 tablets twice daily. THIS seems to be helping immensely. It's been suggested that I have EPI with BAM. I have had 12 days straight with no diarrhea. However it is still too early to determine if this is the magic combination. Fingers crossed. I am still having significant discomfort in the right upper quadrant (under rib cage) that radiates into back. Will keep everyone in this forum posted.

I had my gallbladder removed a long time ago. Bile acid malabsorption, seems to describe a lot of what I am going through. I have doubled my dose of Creon as of yesterday. This morning has been awful. Watery diarrhea, green and metallic in smell. Continued discomfort on right side below rib cage. I am beyond frustrated. This is so not living. Does anyone know if Cleveland Clinic has a digestive department?