Dr. Steven Freedman, MD, Ph.D., a worldwide expert on pancreatic disease and cystic fibrosis, presented on Mission: Cure’s Pancreatitis Patient Webinar on Exocrine Pancreatic Insufficiency (EPI) and Pancreatic Enzyme Replacement Therapy (PERT). EPI is one of the symptoms of pancreatitis. For a more comprehensive overview of EPI, please read this article.
Enzymes and PERT are a confusing but critically important part of chronic pancreatitis treatment. If you missed the webinar, you can watch it here. We had so many questions during the webinar that we could not get to them all. Here, Dr. Freedman answers patients’ questions about EPI.
How do I take pancreatic enzymes for EPI? How many enzyme pills should I take?
Q. At what part of the meal or snack should I take my enzymes?
Dr. Freedman: The goal is to mimic the actions of a healthy pancreas and a healthy pancreas will release more enzymes with more fat. Therefore, a person should consider how long it will take to eat a meal and what they are eating and take the appropriate enzymes. If the meal is taking longer than expected, they need to take more enzymes to match enzymes with food.
Q. A question about pancreatic enzyme dosing: For an adult the dosing recommendation is 500 lipase units per kg/meal and 250 lipase units per kg/meal. Is dosing based on the size of a meal or amount of fat? Are these just ballpark doses?
The FDA approval is based on body weight. However, the pancreas does not secrete based on a person’s weight but based on the food that is ingested. A typical dose based on severity of EPI is as follows (may vary by patient):
- Mild: 1-3 capsules (24,000)/meal and 1/snack
- Moderate: 2-5 capsules/meal and 2/snack
- Severe: 5-7 or up to 9 capsules/meal and 3-5/snack
A meal with a very high fat content might require 9-12 capsules. There is no magic formula or medication guide and each person may be different. The amount of fat in a meal or snack affects the amount of enzyme needed.
Q. Does drinking a glass or so of water when eating a meal cause the enzymes to move through the stomach faster (wash the enzymes away before they can start working)?
Dr. Freedman: Actually, some fluid with enzymes is helpful as enzymes need some fluid to dissolve well. For example, an 8 oz glass of water with enzymes can be helpful.
Q. I make a protein drink with milk and 10,000 Creon and this makes me constipated. Why?
Dr. Freedman: If you are constipated after certain foods or drinks, it is usually due to your normal digestive state (for example, dairy causes constipation in some people). This is usually not due to the enzymes, as enzymes (Creon medication) do not cause constipation.
Q. Do the enzymes really expire after a few months or is that just a ploy by the pharmacy to get us to buy enzymes more often?
Dr. Freedman: Enzymes do have an expiration date since the enzymes need to be active. Usually, they are ok for a year.
Q. Can you break Creon medication apart to take throughout a meal, or does it reduce effectiveness?
MC: Creon capsules should not be crushed or broken apart as that will affect how they are digested and absorbed and interfere with the action on food.
Q. Do you need to take Creon medication with certain drinks like hot chocolate?
MC: Yes, if the hot chocolate is made with regular milk and chocolate which has fat. Enzymes are probably not needed if it is the “low fat, low sugar” kind of hot chocolate made with water.
Q. What about over-the-counter pancreatic enzymes?
Dr. Freedman: Over-the-counter enzymes, digestive aids, or over-the-counter pancreatic enzyme supplements are unregulated and most of them are not active whatsoever. I have found none that are effective and believe these are a waste of money.
Q. Is there a vegan (non-animal based) enzyme that you recommend?
Dr. Freedman: No. All enzymes today are from pig pancreas. There is currently research and development going on to create a non-pig formula.
EPI (exocrine pancreatic insufficiency) symptoms and causes
Q. Why did it take so long for my physician to finally diagnosis me with EPI?
Dr. Freedman: There are few people with expertise with EPI and PERT outside of cystic fibrosis, as most other doctors have not had experience or training in this area. I have published extensively to provide more information for clinicians and others on this subject. Many doctors don’t consider it unless the patient presents with symptoms but often malabsorption has been going on for quite some time prior to obvious symptoms. Doctors should test, look at the EPI test results and treat when there is any question of EPI such as low counts in the fat-soluble vitamins.
Q. What are some causes for EPI in a child without cystic fibrosis?
Dr. Freedman: There are a few other causes including chronic pancreatitis, celiac disease, a rare genetic disorder called Shwachman-Diamond Syndrome and occasionally, idiopathic EPI that, even though there is no known cause, is treated the same with enzymes.
Q. With hereditary chronic pancreatitis for 22 years, I have all of the EPI symptoms with a chronic low lipase levels of below 10 but my fecal elastase was only 180. How could that be?
Dr. Freedman: The pancreas does have plenty of pancreatic elastase on reserve and is not until >90% of the pancreas is destroyed, that EPI will develop clinically.
EPI, pancreatic enzymes and diabetes
Q. What about patients with diabetes? Does Creon/PERT affect insulin for a diabetic?
Dr. Freedman: It is no accident that the endocrine and exocrine pancreas cross talk and that a person with diabetes can affect the exocrine function. Insulin is needed to keep the acinar cells healthy to release enzymes and EPI can affect the release of insulin. There is a big effect on a patient if they are diabetic and have EPI and do not take enough enzymes. Without sufficient enzymes, there is malabsorption and not enough nutrients, including glucose will rise . This affects the amount of insulin required. If the patient then starts taking PERT or increases their dosage , they will be getting more glucose and their insulin requirements will be higher. A person with diabetes needs to carefully monitor their blood sugar when starting to take PERT.
Pancreatic enzymes and the gallbladder
Q. I no longer have a gallbladder. How does that affect my digestion? (My pancreas has been resected and I have already been diagnosed and treated for EPI.)
Dr. Freedman: This may result in bile salt malabsorption, which affects how well fats are broken up and digested. In some patients, persistent oily diarrhea may develop from bile salt malabsorption, and is treated with a bile binding drug (cholestyramine, Welchol, etc).
Chronic pancreatitis pain treatment
Q. You said on the webinar that Viokace is the only enzyme shown to improve pain because it is uncoated. Should I ask my doctor to switch to Viokace?
Dr. Freedman: There is no need to change to Viokace for EPI treatment. For the treatment of pain, especially if the pain is not responding to Zenpep or Creon or another enzyme, then you could ask your physician to switch to Viokace with an acid blocker to see if it helps.
I can’t afford pancreatic enzymes
Q. My co-pay for Creon with insurance is over $400. My income is a bit too high for assistance. Any ideas on how to get it at a lower cost?
Dr. Freedman: This is an issue for some patients as enzymes are expensive. Most of the manufacturers of enzymes have assistance programs. You should check with them. Also, check with your physician to get help with these assistance programs and/or to try to get authorization from your insurance company.
Do I need pancreatic enzyme replacement therapy, or PERT?
Q. I have been diagnosed with chronic pancreatitis. I have/had no symptoms of EPI. 1st fecal elastase was 70. Put on Creon for EPI and to alleviate pain. On Creon for ~ 1 month, retest of elastase was >250. 7 small meals/snacks day, one 12,000 unit Creon with each. Want to go off Creon for 2 weeks and retest fecal elastase. Not sure I need it at all.
Dr. Freedman: Creon will not interfere with the fecal elastase test. Given a normal value of >250, it is not unreasonable to retest.
Q. What is the risk of starting PERT too soon? I have low elastase but my doctor said I don’t need to start PERT because I have no symptoms.
Dr. Freedman: There is no value to starting PERT prior to a diagnosis of EPI but there are no risks of taking PERT. PERT has no side effects but they will not be absorbed and no data that supports that taking PERT will slow down the progression of the disease. In some patients with frequent recurrent acute pancreatitis attacks, quick release PERT may help.
Q. I have Crohn’s of the jejunum and a partial pancreatic divisum. I am low in Vitamin A and D but I don’t know about the other vitamins. Do I need to take enzymes?
Dr. Freedman: You should have your physician check a pancreatic fecal elastase test and that would determine if you need PERT.
Q. I have chronic pancreatitis and my MRI shows atrophy. Does taking enzymes help slow down the atrophy process?
Dr. Freedman: Probably not based on studies in animal models of pancreatic disease. We would like enzymes to slow down the process of atrophy but instead we need to target the underlying chronic pancreatitis to minimize inflammation and scarring to minimize the atrophy process.
TPIAT and pancreatic enzymes
Q. If I get pancreatic surgery, do I automatically need a PERT?
MC: If you have a total pancreatectomy you will need PERT as you will no longer have a pancreas to produce enzymes.
Q. I had the TPIAT (Total Pancreatectomy with Islet Auto-Transplantation) 17 months ago. I take Creon medication as I had prior to my pancreatectomy. I need an NJ feeding tube. Will I need to take enzymes still?
Dr. Freedman: After a pancreatectomy you will need to take enzymes as you no longer have a pancreas to provide these enzymes. There is a product called RELiZORB that provides enzymes in a cartridge designed to work with enteral feeding.
Q. What enzyme do you suggest for a young adult who has had a TPIAT and still has pain?
Dr. Freedman: This is a complicated issue since TPIAT should have relieved your pain from chronic pancreatitis. Thus, other causes of your pain should be explored.
Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School