Question about Creon

[SunState]

Just wondered if anyone knows if being on Creon (PERT) means you're at the worst end of CP? I'm scared I really have PC but just haven't been able to get into the GI Dr. It's my Medicaid holding me up but I'm tired of waiting so long. Just don't understand if being on Creon is "normal" for CP or ? Thanks

[LeopardGecko Pioneer]

I don't know much about Creon but didn't want to leave you without any answer.

My husband was hospitalised with necrotising pancreatitis a few years ago. After recovering, he was put on a high dose of PERT (he has Nutrizym 22 rather than Creon). I would assume that the dosage would depend on how much 'help' is needed with digestion. We've been told that my husband only has about half of his pancreas left and I assume why this is why he is on a very high dose. I suppose if someone isn't quite as 'bad' then they would have a much smaller dose. But I just don't know for sure.

I hope you manage to find some answers.

[SweetCajun]

SunState,I believe being put on Creon is a normal response to your condition and nothing to be alarmed about. All the Creon is doing is making up for the lack of enzymes that your ailing pancreas cannot put out anymore.

I have epi and am on Creon as well.

Hope this helps.

John Derouen

[IH8EPI]

Greetings SS,

"Normal" is a relative term.

In my case, I was prescribed Creon last April, 2023. It was after I had the MRCP test done which revealed a blocked bile duct, and at the same time, an ultrasound found gallstones, which necessitated it's removal. Upon my release from hospital, I was referred to a Gastroenterologist, who indicated I had EPI/CP. I was highly concerned about an unintended weight loss, which was over 70 lbs./32 kg. in 6 months. He prescribed Creon 36/114k. It was a lifesaver. It took a few months before I noticed any marked improvements. As of a few months ago, my symptoms have all vanished, and I have gained back 15 lbs./7 kg.

Now, the only thing I am hoping for is not having to take out a second mortgage to pay for this HIGHLY expensive enzyme. I wish you good health and much success on this journey