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.

Interested in more discussions like this? Go to the Digestive Health Support Group.

creondave | @creondave | 2 days ago

In reply to @icafe51 "So I’m New to this chat group. Does anyone else get flare ups? It makes hard..." + (show)

Yes it certainly does make it a challenge. Even if I have the energy, the paranoia and the embarrassment of going out can make it challenging. With time, I can get prolonged periods of decent energy and no diarrhea. It can come on suddenly, though, even without an upset stomach, so best to be prepared when going out by knowing where the bathrooms are, and keeping a change of clothes in my car. It's a pain in the neck to plan for this, but for too long it impacted my social life so much that I broke down and changed how I approached going out, or even something like staying in hotels. Life is short and I am not thrilled with the options but I want to take advantage of the days I do feel well.

myrrh739 | @myrrh739 | 2 days ago

In reply to @rka19 "Appreciate your shared info. I continue to have diarrhea, with very few solid stool movements. I’m..." + (show)

I was diagnosed with EPI on January/2021, before that I was having severe diarrhea, abdominal pain. The Doctor prescribed Creon 3600
3 times a day with food, my life change completely, now I can go to a restaurant, without pain

rka19 | @rka19 | 2 days ago

In reply to @myrrh739 "I was diagnosed with EPI on January/2021, before that I was having severe diarrhea, abdominal pain...." + (show)

So glad to hear about your success. The 36,000 units worked at first. I’m going to get another appt asap. My life cannot go on like this.
Happy for you Myrrh739

icafe51 | @icafe51 | 2 days ago

In reply to @darb "Ask your doctor about Colestipol 1M/2 tablets twice daily. It has been a game changer for..." + (show)

Thank you so much for this info! So appreciated.!!

icafe51 | @icafe51 | 2 days ago

In reply to @creondave "Yes it certainly does make it a challenge. Even if I have the energy, the paranoia..." + (show)

So helpful!! I will work on my attitude of change. My hubby wants to travel but that’s would be really difficult for me. It’s embarrassing! So I will have to work on my fear factor. What progress you have made is fabulous! I share your experiences that you had and it’s kind of nice to know others are managing this disorder. Thanks again for sharing your challenges and progress!

szelisk | @szelisk | 2 days ago

I was given Zenprep Dr 40,000, and with insurance, I believe it was 12.00 for 3 months. Has it been cured, nope, but it has helped. Unfortunately, now they believe I have PSC as well (Primary Sclerosis Cholangitis) as well. I'm. hoping to have a definite diagnosis soon. Although, from what I have heard, there are really not very many ways to confirm.

icafe51 | @icafe51 | 21 hours ago

In reply to @szelisk "I was given Zenprep Dr 40,000, and with insurance, I believe it was 12.00 for 3..." + (show)

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.