New Diagnosis of EPI, taking Creon: Sad and scared

Creon has become my best friend although it took a few step ups to get the right dosing

How do you afford Creon ?? I was told I make $200/year too much for the corporate grant. I take natural digestive enzyme supplements and do well. I think if I had the cost of Creon looming over me … the stress would prevent the Creon from working.

I have been getting for a $35 monthly copay. I have a Medicare part D plan with Wellcare. I am not sure how this works, but it is being covered by my Medicare part D plan.

I'd like to add my welcome, @sqlgirl13. I love your picture and hope you'll add it to your profile.

It is sad and scary to get a new diagnosis of exocrine pancreatic insufficiency (EPI). In addition to the helpful replies you got from @gardenlady1116 and @nonnie9153, I'm tagging other EPI members like @7judy2 @stageivsurvivor @lon @irr4et @dia2ne @kamama94 @jenatsky @anniegk @ruble429 @mialeigh @carolannd to join this discussion.

You may also be interested in this related discussion in the Digestive Health support group:
- New to exocrine pancreatic insufficiency (EPI): What helps? https://connect.mayoclinic.org/discussion/exocreine-pancreatic-insuffencyepi/

Back to you sqlgirl, how are you doing on Creon? Has it helped? What questions do you have about what to expect?

Wow, I'm in the same boat. Diagnosis made for a sad Valentine's Day, as this is added to my 15 years of lymphocytic microscopic colitis. Enough already!

Happy that my new gastro doc identified this, but scared as hell.

I too have just been diagnosed with EPI and have been put on Creon. Don’t quite know how to navigate this new world🤪🤪🤪
I’m planning a trip to France in May & am scared I can’t to it! And hints?

After my husband had a Whipple surgery, he was put on creon. I picked up the first prescription in April 2018 and it was $40 (yes, really). When I went back for a refill it was over $800. By the time Jim died in May 2020, it was over $2000 after insurance. I had unopened bottles of Creon I hated to toss in a prescription pill throw away bin at CVS. So I looked on line to see if I could donate it anywhere. The state of Wyoming has a prescription pill return where you can donate unopened and sealed pills so I sent $8000 worth of Creon pills there and they accepted them. I don't know what happened between our first fill at Kmart until the next time. The patents for the drug will expire in 2024-2034.

Hi, to make a long story short, my wife had a Pancreatectomy, and was left with 25% of her pancreas, back in 2011. We could not afford the Creon, she got some samples but not enough.
For a period of time we toughed it out. A few years later, her gastro dr told her about an alternative. It has been on the market for a few years and still not very many people know about it. It's a practitioners exclusive made by Metagenics, called SpectraZyme PAN 9x.

There is also a second with 2x the lipase, call Pan 9x ES
Since this is my first posting, I am not allowed to put their site up, so just do a search for Spectrazme with either the Pan 9x or Pan 9x ES and that will get you there.
As subscribers' through her dr, we received a discount. Way more inexpensive than Creon and has the same functional ingredients. To any and all who read this, go to the site, check it out. If anyone here is currently taking it, let me know. We finally were approved for Croen this year, through MyAbbvie (the direct manufacturer), so we have 2 bottles sealed of the ES (90 count each) we do not want to toss or give away to a corporation. Pix of our bottles is attached. I have had them posted online for less than half of the discounted price. So I found this site. In hopes of finding others who need it.

Questions, just inquire.

I too have recently been diagnosed with severe EPI and got samples of Creon and Trulance. There is no way I can afford the cost of these drugs, do not know what I am going to do. I have a CT scheduled w/contrast. I've had pretty bad symptoms of EPI 2 -3 years ago but no one listened, but now confirmed WOW!!!!

Yall are so fortunate to have a provider who will recommend a Non-Pharmaceutical. I have completed everything I was advised to do. Still no diagnosis or relief. I'm tired of practitioner Monopoly. Each one sends you to someone else ... another and another ... nothing determined. I asked a question of my GI following an Endoscopic US. He made remarks in the notes about seeing issues other than what he was looking for. I questioned as to how I should follow up.
WELLLLLLLL ... he hid those notes in some file that appears, name only, that I cannot access. I'm 70 ... getting pushed over the cliff. I have found a couple of independent practitioners that I am going to try to see.
God Bless you and your wife.