1. < Digestive Health

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.

rka19 | @rka19 | Nov 23, 2024
In reply to @icafe51 "It’s rough, isn’t it? I just had a resurgence of all the painful symptoms and it..." + (show)
@icafe51

It’s rough, isn’t it? I just had a resurgence of all the painful symptoms and it kept me home for a
Week. I never heard of this
Disorder before. It’s quite challenging.

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After 3 years of having the wrong dx to deal with, answer is YES
The comes $614 for the medicine. I wish I cold just finish something and mark it off my list
Thanks

REPLY
1 reply
icafe51 | @icafe51 | Nov 23, 2024
In reply to @rka19 "After 3 years of having the wrong dx to deal with, answer is YES The comes..." + (show)
@rka19

After 3 years of having the wrong dx to deal with, answer is YES
The comes $614 for the medicine. I wish I cold just finish something and mark it off my list
Thanks

Jump to this post

Wow. 3 years! Hard to imagine the wrong Rx. Sorry you had that experience! Thanks for sharing your info!

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darb | @darb | Nov 24, 2024
In reply to @icafe51 "So …I’m on Creon but I’m hearing you say there is another medication I could take..." + (show)
@icafe51

So …I’m on Creon but I’m hearing you say there is another medication I could take in addition to Creon. Hopeful!

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Ask your doctor about Colestipol 1M/2 tablets twice daily. It has been a game changer for me. Research BAM. Bile Acid Malabsorption.

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1 reply
creondave | @creondave | Nov 24, 2024
In reply to @icafe51 "So I’m New to this chat group. Does anyone else get flare ups? It makes hard..." + (show)
@icafe51

So I’m
New to this chat group. Does anyone else get flare ups? It makes hard to plan activities.

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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.

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1 reply
myrrh739 | @myrrh739 | Nov 24, 2024
In reply to @rka19 "Appreciate your shared info. I continue to have diarrhea, with very few solid stool movements. I’m..." + (show)
@rka19

Appreciate your shared info. I continue to have diarrhea, with very few solid stool movements. I’m still afraid to leave the house
Rebecca

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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

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1 reply
rka19 | @rka19 | Nov 24, 2024
In reply to @myrrh739 "I was diagnosed with EPI on January/2021, before that I was having severe diarrhea, abdominal pain...." + (show)
@myrrh739

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

Jump to this post

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

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icafe51 | @icafe51 | Nov 24, 2024
In reply to @darb "Ask your doctor about Colestipol 1M/2 tablets twice daily. It has been a game changer for..." + (show)
@darb

Ask your doctor about Colestipol 1M/2 tablets twice daily. It has been a game changer for me. Research BAM. Bile Acid Malabsorption.

Jump to this post

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

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icafe51 | @icafe51 | Nov 24, 2024
In reply to @creondave "Yes it certainly does make it a challenge. Even if I have the energy, the paranoia..." + (show)
@creondave

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.

Jump to this post

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!

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szelisk | @szelisk | Nov 25, 2024

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.

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2 replies
szelisk | @szelisk | Nov 25, 2024
In reply to @jlmp "I’ve researched online and some sources say EPI increases the risk of pancreatic cancer. Does anyone..." + (show)
@jlmp

I’ve researched online and some sources say EPI increases the risk of pancreatic cancer. Does anyone have a definitive answer? And if there is a risk, would it make sense to have a scan every 6 months or so?

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I haven't heard that, but it something great to ask.

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