1. < Digestive Health

New to exocrine pancreatic insufficiency (EPI): What helps?

Posted by jewill @jewill, Dec 6, 2016

I was dignosed with e p i. Exocrine pancreatic insuffency in 2015 after having a severe reaction to premarin estergen cream then 2 weeks later i had an even more sever reaction to an infusion of reclast it is a biphosphonates l am severly allergic to phosphates, dr did not check for that. i had diarrhea lost 20 lbs destroyed 90 % of my pancreas dr gave me creon 3600 2 with each meal low fat diet that is all the information i got from him did research on web for diet and supplments .need a dr in austin tx that knows more about e p i would apprecate any info on this thank you jewill

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lenab | @lenab | Dec 13, 2022
In reply to @janf27 "Thank you for reply. I am a dinosaur & technology challenged have had hard time getting..." + (show)
@janf27

Thank you for reply. I am a dinosaur & technology challenged have had hard time getting on. 1st 2 days just got black screen after seeing post from Coord. I know there r others hope I can get to them today. Previously saw bob name but cud not see post. U can’t all be pay $4k for Zenpep. Mon saw new dr rx for Creon that cost $1000 apologize 4 posting here as I’m afraid I’ll get black screen again. Has anyone had side affects from Creon & how did u get discount? Thx to all

Jump to this post

Apply thru your doctor for Creon thru MyAbbvieAssist. If you qualify the manufacturer will provide free of charge. You must provide income and medical expenses with application. Your doctor will fill out his part and then fax it in. Even if you receive Medicare you can still qualify.

REPLY
1 reply
janf27 | @janf27 | Dec 13, 2022
In reply to @johnbishop "Hello Jan @jan27, Welcome to Connect. Not sure which EPI discussion you were viewing. Here is..." + (show)
@johnbishop

Hello Jan @jan27, Welcome to Connect. Not sure which EPI discussion you were viewing. Here is a list of the EPI discussions:

-- New to exocrine pancreatic insufficiency (EPI): What helps?: (sorted to show newest posts at the top)
https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/?commentsorder=newest#chv4-comment-stream-header
-- EPI meds expense: https://connect.mayoclinic.org/discussion/epi-meds-expense/
-- EPI - Need Advice: https://connect.mayoclinic.org/discussion/epi-need-advice/
-- EPI abdominal cramping: https://connect.mayoclinic.org/discussion/epi-abdominal-cramping/

You can also click on the Help Center link on the menu near the top of any Connect page on the right side. It's a little harder if you are using a phone to view Connect because you have to slide the menu to the left to see the Help Center link. Here's the direct link - https://connect.mayoclinic.org/help-center/

Jump to this post

Thx a million John will chk ur sites 4 costs & hopefully get rx filled today got creon down to $1000 but still on hold. Thx 4 giving me hope

REPLY
janf27 | @janf27 | Dec 13, 2022
In reply to @lenab "Ask for patient assistance from the drug manufacturer" + (show)
@lenab

Ask for patient assistance from the drug manufacturer

Jump to this post

Thank you for reply. I am a dinosaur & technology challenged have had hard time getting on. 1st 2 days just got black screen after seeing post from Coord. I know there r others hope I can get to them today. Previously saw bob name but cud not see post. U can’t all be pay $4k for Zenpep. Mon saw new dr rx for Creon that cost $1000 apologize 4 posting here as I’m afraid I’ll get black screen again. Has anyone had side affects from Creon & how did u get discount? Thx to all

REPLY
2 replies
lenab | @lenab | Dec 12, 2022
In reply to @janf27 "I was just diagnosed with EPI & have been in limbo for days wondering why Medicare..." + (show)
@janf27

I was just diagnosed with EPI & have been in limbo for days wondering why Medicare did not have my Rx listed Zenpep, insurance declined it & my inaccessible dr has not responded to me nor pharmacy. So I asked cost w/o insurance $4000+ with Good Rx $3000+ New to all this discussion? Or is this a blog? hoping post will get me back to EPI thread. I was trying to switch from oldest to newest when all I got was a list of other conditions but no EPI? Need help thx much Jan

Jump to this post

Ask for patient assistance from the drug manufacturer

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1 reply
irr4et | @irr4et | Dec 11, 2022

You need to find a Gastroenterologist not long out of medical school. More is known these days about gluten’s effects on the pancreas- it happens bc we lack the enzyme to break down gluten and Gliadin. Gluten and Gliadin are a gluey protein I believe.

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Judy Ashby | @judyashby111 | Dec 11, 2022
In reply to @irr4et "I can really identify bc I have EPI too bc I ate gluten the first half..." + (show)
@irr4et

I can really identify bc I have EPI too bc I ate gluten the first half of my life bc I didn’t know what gluten intolerance was and the damage it does to ppl who cannot digest it. My father was that way too but before he died, he never did learn about the damage gluten can do to our pancreas so he had EPI too but was never diagnosed. He died a sickly person sadly, bc his Primary Care Dr never mentioned this to dad or referred him to a gastroenterologist specialized in Celiac and Gluten Intolerance.
I have been on Pertze which is same as Creon, for 5 years. My insurance doesn’t cover it so it costs me $1200/yr or more.
And I take two Hydrocloric Acid capsules/meal also. It helps us break down (digest) proteins just like Protease in Creon and Pertze do. What it costs for us to just stay alive is unfortunate isn’t it?

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OMG. This is the very first time I have heard any connection between gluten and the pancreas! I was diagnosed with Celiac in 2006, and EPI in 2021, Diabetes and CP just in the past 10 days! How come no doctor ever mentioned this?

Thank you! Now I will start more research.

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1 reply
irr4et | @irr4et | Dec 10, 2022
In reply to @colleenyoung "Hi @janf27 I moved your message to this existing discussion that I think you were looking..." + (show)
@colleenyoung

Hi @janf27
I moved your message to this existing discussion that I think you were looking for:
— New to exocrine pancreatic insufficiency (EPI): What helps?
https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/
Here you can read through the comments and easily connect with other member living with exocrine pancreatic insufficiency (EPI) like @lon @irr4et @dia2ne @kamama94 @jenatsky @anniegk @ruble429 @mialeigh @carolannd and more.

I think @kamama94 @jenatsky may have some insight about drug coverage. I hope you hear from your doctor or pharmacist soon.

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Thank you for helping us all get connected so we can share helpful info!! Mrs Neal (irret2)

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irr4et | @irr4et | Dec 10, 2022

I can really identify bc I have EPI too bc I ate gluten the first half of my life bc I didn’t know what gluten intolerance was and the damage it does to ppl who cannot digest it. My father was that way too but before he died, he never did learn about the damage gluten can do to our pancreas so he had EPI too but was never diagnosed. He died a sickly person sadly, bc his Primary Care Dr never mentioned this to dad or referred him to a gastroenterologist specialized in Celiac and Gluten Intolerance.
I have been on Pertze which is same as Creon, for 5 years. My insurance doesn’t cover it so it costs me $1200/yr or more.
And I take two Hydrocloric Acid capsules/meal also. It helps us break down (digest) proteins just like Protease in Creon and Pertze do. What it costs for us to just stay alive is unfortunate isn’t it?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 10, 2022
In reply to @janf27 "I was just diagnosed with EPI & have been in limbo for days wondering why Medicare..." + (show)
@janf27

I was just diagnosed with EPI & have been in limbo for days wondering why Medicare did not have my Rx listed Zenpep, insurance declined it & my inaccessible dr has not responded to me nor pharmacy. So I asked cost w/o insurance $4000+ with Good Rx $3000+ New to all this discussion? Or is this a blog? hoping post will get me back to EPI thread. I was trying to switch from oldest to newest when all I got was a list of other conditions but no EPI? Need help thx much Jan

Jump to this post

Hi @janf27
I moved your message to this existing discussion that I think you were looking for:
— New to exocrine pancreatic insufficiency (EPI): What helps?
https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/
Here you can read through the comments and easily connect with other member living with exocrine pancreatic insufficiency (EPI) like @lon @irr4et @dia2ne @kamama94 @jenatsky @anniegk @ruble429 @mialeigh @carolannd and more.

I think @kamama94 @jenatsky may have some insight about drug coverage. I hope you hear from your doctor or pharmacist soon.

REPLY
1 reply
Mentor
John, Volunteer Mentor | @johnbishop | Dec 10, 2022
In reply to @janf27 "I was just diagnosed with EPI & have been in limbo for days wondering why Medicare..." + (show)
@janf27

I was just diagnosed with EPI & have been in limbo for days wondering why Medicare did not have my Rx listed Zenpep, insurance declined it & my inaccessible dr has not responded to me nor pharmacy. So I asked cost w/o insurance $4000+ with Good Rx $3000+ New to all this discussion? Or is this a blog? hoping post will get me back to EPI thread. I was trying to switch from oldest to newest when all I got was a list of other conditions but no EPI? Need help thx much Jan

Jump to this post

Hello Jan @jan27, Welcome to Connect. Not sure which EPI discussion you were viewing. Here is a list of the EPI discussions:

-- New to exocrine pancreatic insufficiency (EPI): What helps?: (sorted to show newest posts at the top)
https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/?commentsorder=newest#chv4-comment-stream-header
-- EPI meds expense: https://connect.mayoclinic.org/discussion/epi-meds-expense/
-- EPI - Need Advice: https://connect.mayoclinic.org/discussion/epi-need-advice/
-- EPI abdominal cramping: https://connect.mayoclinic.org/discussion/epi-abdominal-cramping/

You can also click on the Help Center link on the menu near the top of any Connect page on the right side. It's a little harder if you are using a phone to view Connect because you have to slide the menu to the left to see the Help Center link. Here's the direct link - https://connect.mayoclinic.org/help-center/

REPLY
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