What are other survivors doing about pancreatic enzymes replacement?

Hi
I am 11 months post Whipple for pancreatic Ca. I have spoken to my gastroenterologist about this a few times. I do not take any enzymes, I was originally prescribed Creon and did take it for a short while, but I am able to eat without it, I have no symptoms after eating. The doctor said if it doesn’t seem to make a difference there is no reason to take it. I have been blessed with the ability to eat just about anything post surgery

Scroll up to the stage4survivor post- could be very helpful to you to find a better price or other options.
Best of luck to you.

I was diagnosed with gastrinoma neuroendocrine tumor in the pancreas head which was removed in May 2020 by Whipple Surgery. Once a while I still have occasional diarrhoea, bloated stomach, heart burnt hence try to have frequent smaller portion of meals, avoid spicy & oily food & alcohols.

For what Pancreatic issue did you have surgery?

I am also interested in Pure enzymes. I am having stomach issues with Ceron and also bowel, hemorrhoids, just don’t feel good on them the higher the dose the worse it gets. I have been told by friends that Pure encapsulations are good. Any comments?

My husband has had 2 severe cases of pancreas. He has also been prescribed creon and sadly it is very expensive. $480 for one month and $150 for 3 months with insurance after deductible has been made. I suggest checking Amazon pharmacy, goodrx, Mark Cubans pharmacy, and if it is still too expensive you can contact the manufacturer to see if you qualify for a reduced price. I was also going to try a Canadian pharmacy.
Best wishes for you.

Check with the manufacturer for Creon. They have a program that may help you with cost.
I have applied but not heard back yet. It is very expensive.

Took a little while to fill out the form, but it should be possible to figure out meals that are commonly eaten and then branch out when trying different foods

On a related note to taking pancrealipase, a frequently asked question relates to how can one determine the right amount to take based on meal type and quantity. CraigsCause Pancreatic Cancer Society of Canada (CraigsCause.ca) working in conjunction with the Canadian Digestive Health organization has come up with a dosing calculator. It is not a downloadable app yet but follow the link below to register. Below I will provide information on how to save the link on your smartphone or tablet Home Screen. The instructions are for Apple products but I was told it is a similar procedure for Android users.

PERT CALCULATOR
Go to the Canadian Digestive Health website where they offer an app that will calculate the amount of pancrealipase required for sufficient digestion based on meal type and quantity. Patients can select to display units of measure in grams or ounces.
https://digestthis.ca/
When the Registration screen appears in your web browser, along the bottom of your screen, look for an icon of a box with an arrow pointing upwards. It should be in the middle of the bottom menu bar.

Click the icon and a partial window May pop up from the bottom of the screen. Using your finger, slide your finger upward so you can view more options below the screen viewing area.

Look for the choice “Add to Home Screen” and tap it. It will now create a shortcut icon somewhere on the Home Screen (depending on how many apps and screens there are). It will be an image of the Registration page and likely be labeled PERT form.

In response to what others are doing regarding the taking of pancrealipase products such as Creon, they can have a substantial co-pay depending on ones’s health insurance plan. All five manufacturers of the Rx pancrealipase have patient assistance programs offering a significant discount or for those on Medicare, it is provided free of charge if the financial criteria for the respective program is met.

The following websites provide details about the patient assistance programs-

PATIENT ASSISTANCE PROGRAMS
https://www.creon.com/creon-support-programs
https://www.creoninfo.com
https://www.zenpep.com/savings-programs
https://pertzyecares.com/chiesi-caredirect/
https://www.nestlehealthscience.us/sites/g/files/lpfasj536/files/2020-09/nestle-us-pap-application%20sept%202020.final_.pdf
There are OTC pancrealipase available, however their concentrations of amylase, lipase and protease differs from the Rx brands. More capsules per meal type will likely be required to match the concentrations and dosage of the Rx brands. It helps to keep a daily food journal in optimizing the number of capsules required to achieve efficient digestion of a meal type and quantity of food.

Not requiring a Rx, they do not have to adhere to the higher FDA standards set for the Rx versions. The tolerance for stated concentrations and purity is not as high as with the Rx versions. The brand most often recommended by dietitians affiliated with pancreas programs at major medical centers is the Vital Nutrients brand.