What are other survivors doing about pancreatic enzymes replacement?

I was taking something which eludes me at the moment but my doctor changed it to Creon. I take 3 capsules 3 times a day before meals. I had the tail of my pancreas removed which is where digestive enzymes are produced. I would ask the doctor about any OTC drugs to be sure. Hope your father stays healthy and active.

if you can contact me I may be able to help. My wife passed away July 9th and was on Creon for 7 years. It was very helpful to her

Congrats on your continued good health! I’m always a bit leery of trying otc formulations not recommended by a doctor. The Pure Encapsulations Pancreatic Digestive Enzymes are not tested by the FDA or other regulatory bodies so I am a bit skeptical. I would also be interested in hearing if anyone is using them and if their doctor had recommended them.

I stumbled across this thread while researching options for obtaining Creon more affordably while my dad is in the Medicare donut hole. Dad also had the Whipple surgery 2 years ago for stage 2b pancreatic cancer. Creon helps the diarrhea but does not eliminate it. Very gradually over a year or so, he was able to get back to a more desirable weight and is back to his active lifestyle despite needing to stay close to a bathroom due to diarrhea one to two times a day. The Ensure and other protein drinks recommended to increase his protein intake made the diarrhea worse and upset his stomach so he stopped that …probably developed a bit of lactose intolerance. Dad recently tried cutting back on the Creon due to the cost, but his GI symptoms became intolerable. His doctor is working with him to try to get some financial help from Abbvee. Don’t know when or if we will hear back from them. This is a huge issue for so many people and I wish I knew of a way to work toward a solution for everyone who needs this medication!

There aren't a lot of options for pancreatic enzyme products. There's Creon and Zenpep which is similar and also costly. Our nutritionist mentioned this product but we haven't tried it. https://www.vitalnutrients.net/pancreatic-enzymes.html

My wife has been using Creon for 2 years and her insurance has thankfully covered it so far. Try to get prescriptions for 12000, 24000 and 36000 doses. The insurance company won't like it but my wife had to experiment a lot and found that too much Creon was almost worse than too little (gas, bloating). She uses 12000 or 24000 for small snacks based on how fatty they are and 3 x 36000 for full meals.

Good luck.

We are just starting Creon and it is a hard one to figure out. My husband is a month and half since his surgery. They couldnt do a Whipple so they left the tumor and did introperative radiation. Since then his digestive issues have worsened so we are wondering if pancreatic insufficiency is at least part of the problem. In addition to the cost, the amount of Creon needed can be individual..so far my husband is not getting much benefit and still has to take opiates and maijuana for relief from stomach pain.. Does anyone have any experience with other forms of PERT??

I was told my pancreas not making enzymes. doctor ordered the very expense enzymes and I know nothing else

My wife is still taking Creon and has actually upped the full meal dose to 3 x 36000 caps three times a day. The latest three month refill had a note from the pharmacy, that our insurance saved us $11,900 ! We reach her out of pocket maximum pretty quickly but the pharmacy that the insurance company partners with is ripping off patients. Since the insurance company determined that Creon is a maintenance drug she has to use their in-house mail order or a mega-chain store instead of the local pharmacy that knows her and actually charges less even for cash customers.

Back on the thread topic, enzyme replacement...

Since starting the new year and new co-pay year, we took a look at the Creon co-pay savings card. The first refill of qty 90 x 36000 units would have been over $900 but with the card, it was $5. Yes, $5 and the pharmacist said it was good for all the refills this year. My wife has private insurance which doesn't get a discount on Creon but once we hit the out of pocket maximum, even the co-pay stops. Not sure how well this will work with Medicare Part D plans.

Worth a look https://www.creon.com/on-course

From the reading that my wife and I have done, the SIBO testing determines the proper course of anti-biotics. If they get hydrogen vs methane readings there are different anti-biotics for each outcome. If going straight to drugs, it's 50/50 that the chosen drug is correct. We prefer knowing in advance that we're treating appropriately (also it would be great to know in advance if we're on the right track). It's entirely possible that the diarrhea isn't from SIBO and a month of drugs unnecessarily could just put us another 30 days behind in finding the right solution and of course, mega doses of anti-biotics have there own side effects.

It's been a battle to get her enough nutrition. She's gained only 4 pounds in 8 months and gets more calories per day than me. When she misses even a snack she'll be down 1/2 pound the next day.

We actually hope that it is SIBO because the test is non-intrusive. Everything else that the gastro has suggested involves anesthesia and endoscopy which would probably knock off her feeding schedule for an entire day.