How to Dose Pancreatic Enzymes for EPI Patients
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- Опубликовано: 4 июл 2024
- Dr. Steven Freedman explains how the severity of EPI is determined and what dose of pancreatic enzymes you should be on for PERT (Pancreatic Enzyme Replacement Therapy). Learn when to take your capsules and how to know if you're on the right dose.
Dr. Steven Freedman from Beth Israel Deaconess Medical Center and Harvard Medical School is a leading expert in the field of pancreatic disease and cystic fibrosis.
Watch the full webinar we organized with him: • Pancreatic Enzymes for...
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Learn more about EPI: mission-cure.org/topics/epi-a...
Mission: Cure is working to cure chronic and recurrent acute pancreatitis using impact investing and innovative financing. Our webinars educate patients, families and clinicians about pancreatitis.
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Great and simple video on PEI. The condition has effected me really...all of my "known life". It's interesting in how long it's taken me "to put a name to the condition". Just at 57 y.o. now...I'm titrating the enzymes in my diet to adjust. I think....not having to know where every "toilet in my zip code" in the future for me...will be a major break through. Cheers to everyone. We're all a "bit different in our genetic destiny".
Frank from Upstate NY, we are both 57 and found out at the same time. I know the pain of planning every trip around knowing how many miles, minutes to every bathroom.
Note: There is at least one company working on a 1 pill a day enzyme replacement. Mission: Cure is monitoring their progress.
Can I get it over the counter?
Thank you Doctor. Such a great help. God bless you.
THANK YOU SO VERY MUCH FOR YOUR BREIF EXPLEINATION ON THE TOPIC OF ANZYME FOR PANCREAN . PLEASE HAVE MORE VIDEOS ON GI PROBLEMS . THANK AGAIN❤
Excellent video. Thanks
Thank you for this informative video!
Very informative thank you🙏🏼
Thank ypu for this video! It really helped
Thank you very much for tgis great information.
After watching this explanation of EPI/chronic pancreatitis and reading the comments I am beginning to feel fortunate. Lost 25 pounds and extreme gas and groaning stomach plus constant diarrhea at first but after 5 months of adjusting Creon 36000 I am taking one capsule with each meal and one with a small snack and have stopped the weight lose. Still struggling to gain weight. Do not eat any fat or oils except olive oil. My insurance pays for the Creon, if they did not I would have to find something else because it is very expensive. I also have had almost no pain. Have to eat lots of prunes and drink prune juice to avoid constipation. I am sorry to hear all the difficulties others have with this disease.
@@samuweljon4001 Is Creon form other countries like India is the same as prescribed in USA?
@@SaimTarik no some generics can be made cheaply and even kill you. It must be brand name.
@@SaimTarik yes
Thank you!
I've been on Creon for a few years and I was told to take 1 Creon and 1 dicyclimine 20 minutes before a meal. Now I just recently was told to take 2 before a meal, and 1 before a snack. No one here apparently knows how to prescribe Creon. Where can I get more information to show my doctor's?
There are tons of good resources online, including this one, to give you some perspective as to your dosing requirements of Creon. There are many variables in the equation so it typically comes down to adjusting/titration your dosage for your particular situation. Also, you need to be specific when talking about Creon pills as they come in a variety of units. I use 25s and 10s so i can mix and match my dosage accordingly. Finally, take your pills just before your meal. You'd be surprised what can happen in your stomach in 20 minutes in terms of the digestion process.
Is Creon from other countries are the same as prescribed in USA?
Thank you so much, Dr! My GI has no clue ( in Boston area) .
In Boston area here too...who is your GI?
For all of you who have had a whipple because of a pancreatic cancer, there is a lot to unpack here. The main questions are: is your pancreas producing enzymes; is it producing enough enzymes or, most importantly, how does it know when and how much to produce?" Which begs the question: how is your refashioned digestive system communicating to the pancreas? You don't have a duodenum, so you've lost some of the communication process: cholecystokinin is produced (mostly) in the duodenum and one of it's functions is to kick start the pancreatic acinar cells. Then there is secretin, there is a "dance of intimacy" between secretin and the duodenum. The duodenum plays a key role here: communicating that acid has enter it and calling for help from secretin to start the bicarbonate cycle. Finally, the Brunner glands, which reside in the duodenum (not the jejunum, which you now have directly connected to you stomach) seem like they would be missed. Brunner glands help set the environment for absorption (alkaline; chyme conditioning etc.). Finally, I think we can add the pyloric sphincter as an actor in the communication process. It's function is to meter out the chyme, so as to give the the whole digestive process a pacing. In most whipples, the pyloric sphincter is removed (along with a part of the lower stomach). What does this all mean? Unfortunately, even if your pancreas is working, it might be prudent for whipple patients to consider talking to their doctors about PERT.
Thanks for this. I’ve been curious about this since 2017.
Thanks! Question. I had a whipple one year ago and recently had my elastase tested, which came back at 132. I currently live a relatively symptom-free life without any enzyme supplements unless I have a very large and/or particularly fatty meal, in which case I get occasional abdominal pain and bloating. Do I need or should I still take enzymes with every meal, or only when I eat a large and/or fatty meal which would typically trigger my symptoms? Thank you.
Thanks for your question! As your elastase test came back as 132, it suggests EPI. Even if you are symptom-free after eating small meals, there may be some improper absorption of nutrients, which can lead to further complications. We would recommend listening to what your doctor has recommended, and talking to them about when your symptoms occur and if any changes in when you take enzymes are necessary.
I’m 57, have what my doctor says is suspected epi (I have chronic pancreatitis). Starting losing weight since last July after covid. However, since June I have had oily floating stools, abdo pain and my weight started to drop more quickly. After many tests for everything under the sun n nothing came up except chronic pancreatitis I did some research and came up with epi. My doctor said he not give me creon. I went n got a second opinion n the doctor gave me them. He also sending me to a specialist. 2 weeks on I already went from 1 for each meal to 2 for mains n 1 for snacks. Nice not to have abdo pain plus I have much more energy! My poo not float anymore. I review now after a month n talk to doctor. I still think I need 1 more tablet per meal. However my blood sugars have gone mad!
Thanks for the info. No weight loss here. None of my Doctor's have ever even checked for EPI. If your on Creon, like I am, it gets really expensive, even with insurance coverage.
@@supriyachattopadhyay6897 One prior to meals. I don't eat breakfast so only take two a day. I'm using other pancreatic enzymes at the present time.
I just started a week ago. 1 for a snack, 2 with main meal. I am still having discomfort so I've bumped it up to 3 with main meal. Seems a bit bit better but probably shouldn't until I see doc again. It'll become routine I guess. Affording it is very difficult. Decent chunk of disposable income gone.
@@richiep3520 I stopped taking Creon because of the expense. I take "Now Super Enzymes" during my meal, not before. I take 500 mgs of Turmeric with 10 mgs of BioPerine Black Pepper Extract together to help absorb the Turmeric. I used to take Super Enzymes before meals, but my Doctor suggested taking it WITH meals so it would help my pancreas digestive process better and that seems to work well. If I have discomfort in the pancreas region, I drink a teaspoon of baking soda with a little sea salt to help with salinity, which helps prevent any swelling and usually eases any discomfort in the pancreas area. So far, so good. Been doing this routine of Super Enzymes for over a year now and haven't had any issues..........so far.👍
@@donaldrockjr8314 hello, my mum has been really suffering with diarrea because of low lipase and nothing seemed to work.. it’s frustrating :( can you let me know with brand are you using for super enzymes? And how many pills do you take per day? We’re clueless and doctors seem so baffled by mom’s case! Please please help
@@FatemahAls I have chronic pancreatitis which would cause high lipase levels and this video is about EPI so I have no idea what would help your Mom for low lipase levels. I take Now Super Enzymes during my meals while I eat to help with EPI, along with once-a-day turmeric with BioPerine Pepper Extract to help absorb the turmeric, but again, this is for people that have chronic pancreatitis, not low lipase levels.
Thx I was just diagnosed last week for EPI. now taking CREON probaly for the rest of my life. I am 73 now. Taking vitamin A, D K1 EATING SALMON, RED BELL PEPPERS. GOD help us !
Well, I'm 58 and just diagnosed. How is it going with the CREON? Any stomach pain? BTW, had salmon tonight.
@@counterculture10topped CREON nasty as heck. Gave me headaches severe stomach pain. Now I take ZENPEP, I Also eat salmon 3x week, 0 fat Greek yogurt. I Go to Hopkins on mon 1/9/23 good luck I am 73 years old.
I have a 5y old son with severe EPI. He weighs 13kgs and is sevely disabled. What dosage applies in his case? Or does weight not matter?
I've just been diagnosed withPancreatic Enzyme deficency, its moderate. Other than constantly going to the bathroom more than normal and some bloating and gas. But my 2nd month into treatment with Creon 36,00 3 times a day, I'm having lots of pain. The worst is in my back but I have the gas in my tummy and belching as well. I feel worse than before getting treated. Is there anything that I can do to help this. I'm about to go off of the meds due to how bad the pain is and adding pain killers to my meds isn't a good thing but I have little choice. I take my pill with my meals but was told nothing about snacks or even anything about they types of food to intake or not eat. Any ideas from the doctors on her would be appreciated.
EPI and pain are two separate issues. Please check out our web resources on pain at mission-cure.org.
Creon (PERT) reversed my weight loss and ended the stetorhea I was suffering. Great advise. Creon comes is very high dosages. Only 2 caps needed with meals.
what dose is that? i am taking 4 25k creons, and im still suffering
Im taking 9 X 25k for over one year and stool still sticky. No amount seems to improve it so you are probably the lucky one it helps.
Hi from the uk I’m taking omeprazole twice daily I’m told that acid in the gut makes PERT (creon) less affective what are your thought pls?
Hi Clarire, most patients who are prescribed digestive enzymes such as Creon are advised to also take acid blockers (technically these are proton- pump inhibitors but everyone refers to them as acid blockers) such as Omeprazole to reduce the amount of acidity in the duodenum, to enhance the activity of the enzymes and to improve fat absorption and reduce fatty stools. Studies have shown that omeprazole increases the effectiveness of PERT. Consult with your doctor to see if this is right for you.
@@MissionCure thank you for your reply always informative yes I have found that my EPI had improved whilst taking Omeprazole 👍🏻
very helpful
Hi, i have been diagnosed with necrosis pancreatitis and have been struggling with gaining weight with the creon 25000 capsules x3 with meals and 2 with snacks, my concern is that im not gaining weight but seem to be losing weight and im not sure how to take the capsules as my dietician advised to take them 20 to 30 minutes before meals, i am in the uk and 39 years old, any advise on how and when to be taking the 25000 creon capsules would really be useful as i cant get a dietician appointment for another 6-8 weeks and im really concerned about how much weight I will have lost by then as i have gone from 82kg down to 66kg.
Thanks in advance for any information you may have
We're sorry to hear that! PERT should be taken with the first bite of your meal. This mimics how your body would normally release digestive enzymes when you eat. Taking them too early can make them less effective.
Thank you so much. My doctor prescribed 36,000 and it gives me unbearable intestinal cramps. All my blood work suggests exocrine pancreatic insufficiency. Could I be allergic should I switch from creon to zenpep? Is there a difference? I’m 210 lbs and 66 fecal score.
Good question! It's important to note that intestinal cramping can be a symptom of EPI, itself, rather than the CREON. If your cramps are a result of the CREON, it may be a sensitivity to pork, as PERT is derived from pigs. We recommend talking to your doctor, who may adjust your dose or see if you respond better to a different brand of PERT. For more information on pancreatic enzyme replacement therapy, please visit: mission-cure.org/managing-pancreatitis/pancreatic-enzyme-replacement-therapy/
I’m onto my 4th gastroenterologist in 4 years - not one ever discussed proper dosing of the Creon.The last treated me with antibiotics in case I had SIBO - and I had positive results. So there is overgrowth on top of the pancreatic insufficiency. It certainly feels as if no one knows or cares .
We're sorry to hear that, and know that we care! Our website can be a good learning hub for both patients and providers. Feel free to send your new gastroenterologist our way. mission-cure.org
My dad takes Zenpap due to pancreatic cancer. Per the dietician, he takes 1 capsule per meal and take 2 for a higher fat meal. He says that it sends him to the bathroom. And watching him, it appears to do just that. Should he take a different enzyme? Is there a specialist to go to? It sounds like he definitely need to take more? Thank you
Hi there, thank you for your comment. We would love to refer you to the Pancreatic Cancer Action Network’s Patient Services. They will be able to provide one on one support and personalized resources about enzymes for pancreatic cancer free of charge. You can contact them at 1-877-2-PANCAN or by email at patientcentral@pancan.org.
I have been diagnosed with EPI for at least two years and lost no weight before the diagnosis or since. Could I have been misdiagnosed?
That is possible. Maybe this webinar can help. mission-cure.org/exocrine-pancreatic-insufficiency/pancreatic-enzyme-replacement-therapy/
What is the difference between Creon and Zenpep? Both are pancreas enzymes but some people say they don't feel well on Creon but Zenpep works instead. Wondering why that may be..
Creon and Zenpep are both FDA-approved brands of pancreatic enzymes (pancrelipase). The product is the same regardless of the brand, therefore there is no material difference between Zenpep and Creon. They are both pancreatic enzymes made by two different companies to address the issues of EPI.
Very informative doctor. I am diagnosed with chronic pancreatitis since when I was 13 and now I am 26 and from last few month I am recovered from stetorreah but my farts are so smelly and this exists even I don’t take a meal…. Can you help me here please?
Hi there!
We're sorry to hear about the difficulties you're experiencing. Many patients with chronic pancreatitis face similar challenges. Our holiday tips video provides advice on managing such conditions when you're out in public, which you might find helpful.
Additionally, we recommend working with a gastroenterologist to rule out any digestion-related conditions that could be causing the issue. Maintaining a well-balanced diet with a good amount of fiber can also be beneficial. For more detailed tips, please check out our nutrition webinar.
Wishing you the best!
Holiday Tips Video: instagram.com/reel/C1Hh4iqNaR7/?igsh=MzRlODBiNWFlZA==
Nutrition Webinar: ruclips.net/video/iW3OlS1QPg0/видео.html
They tested mine and it was 34 she said it's really low. Plus microscopic coltis they found this out after having diarrhea for a year after back surgery through the stomach. I'm scared to eat greasy food especially if I don't know where a bathroom is
That's so tough! If you need more resources on eating with pancreatitis/epi, we have some available on our website: mission-cure.org/
I myself have epi right after acute pancreatitis and take together about ~50k units of lipase per day. Because of my pancreas problem i`m in touch with the group of people with pancreas related issues, and i met the guy after complete pancreas resection, due to the cancer. Initially, it was just partial resection, but there were some complications after surgery, and they removed the pancreas completely some time later. He lives already 8y after full resection, and has severe EPI because he is making no digestive enzymes at all. What he takes is about 2x25000 capsule per normal meal, and 3-4x25000 capsules per main meal, which looks like 2 times less comparing to what is proposed here.
We're sorry to hear that! Feel free to share this video with him, and for more information about dosing pancreatitis enzymes, please visit: mission-cure.org/exocrine-pancreatic-insufficiency/
I have done TP. Can u please suggest vitamins and minerals I need to take sir?
Mission: Cure has a recent webinar on nutrition and pancreatitis that explains a lot but isn't specific to TPIAT. This video from the University of Minnesota should give you the information you need. I hope it helps. ruclips.net/video/KLvexHbqgwM/видео.html
Megan
@@MissionCure Thankyou sir
Are you taking new patients??? We are in the area . Please respond. Thank you !
Hi LB - We responded to your other message about your son. We hope you're able to get answers soon! If your son is in pediatrics, we may need to chat more about resources specifically for children. In the meantime, Dr. Freedman can be reached out to by visiting www.bidmc.org/research/research-by-department/medicine/translational-research/people/steven-d-freedman-md-phd.
Can u help me..i am suffering from chronic pancreatitis since 14 yrs and 1 yr ago diagnosed with severe epi. Dr. Suggested me to take 25k three times a day with meal..but i lost 1kg..so for 1 month my doctor suggested to take creon 40k and then switch off to creon 25k.this is the 1st time i am taking creon 40k.. i have severe epi..am i taking correct dose?
It would be great help if u guide me..thank u
We're so sorry to hear this! If you're still losing weight, typically your dosing goes up as well. It's important to communicate with your doctor about your concerns, and they'll be able to help figure out the best dosing for you.
Should I use an enzyme for a piece of fruit ? ( pomegranate or banana)? Thanks for any help!
Small snacks that are low in fat and protein typically do not need to be taken with pancreatic enzymes, like a piece of fruit! However, if you're eating more than one small portion, you may need to eat these with enzymes.
They say yes to every snack
@@laurenmusso4719 o this is not true
what does with the first bite mean? before or after the first bite?
Good question! It's recommended to take them with the first few bites of your meal. Here is some more information that may help: mission-cure.org/exocrine-pancreatic-insufficiency/
@@MissionCure just to be clear so if I finish my meal within 10-15minutes and I need to take 4x creons, then better take all 4 creons BEFORE the first bite of dinner, or spread thru the meal ie one creon at start before first bite and another creon after every bite of food thereafter?
Thank you for the video Doctor. I take Creon for pancreatic insufficiency. If f-Elastase increases progressively from 22 to over 200 in about 3 years; does this mean that EPI is improving or the Creon is working?
Hi Steve, Mission: Cure can't answer this, but here is a resource that may help: www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/609492. I'm glad you found the video useful.
@@MissionCure Thank you! I am genuinely very grateful for the reply. Unfortunately the literature does not answer my question. I am only writing this in the hope that if a specialist does come across this post they might offer me an answer or a published source that will answer the question. It is quite important because I do not know whether my symptoms at the moment are from EPI or from the use of Creon. I have weight gain, rather than weight loss with my EPI and this is greater with Creon. (Yes I know the obvious response is "ask your doctor". I did, but if I repeat that advice no one will refute it; and obviously I am dubious about whether my doctor has actual competence in the area or is just guessing because they are busy. )
@@stevemartin6267 I will try to ask Dr. Freedman. Can you email me where you are located, at info@mission-cure.org?
@Steve Wotshisface sir, how many creon u take daily? I also have severe epi, but it is too costly😓
@@supriyachattopadhyay6897 Hi Supriya; I am sorry to hear of your struggles with EPI and the cost of medication. I take a single 25,000 capsule with main meals and a 10,000 capsule with snacks. That seems to have normalised the f- elastase readings. In reading about the experiences of others they seems to take many more capsules per day than I do. I am still trying to work it all out. Best wishes to you in finding a cost effective treatment. (Prayers are cheap, so I say lots of those! )
It seems like no matter how many creon 25k I take my stool is still greasy. Its never firm but formed. Even on a non heavy fat meal i take 5 and no difference. 91 egfr and never had pains, just bowel noise and very mild discomfort. No diarrhea, no weightloss really, nothing major noticable. I have no undigested food and stool normal colour.
Not sure if I should just keep upping my dose. I will try your suggestion and and try 7-9. I will try over the next week and see if any difference. I pop them ever few minutes as I eat.
It's all experimental and test as you go.
Did taking more make a difference?
@@Jackson_Hts_Mr_Randy_Watson It hasn't helped. Regularly taking 8-9 and same result every time. Not even once in a year has it been normal as in non sticky and hard
I'm sorry to hear that. I had been taking Creon for almost a year and then they stopped working this last month. I was only taking 2 per meal as instructed by my doctor. Although I had severe EPI. Hope you find a solution. @@richiep3520
I get so much bloating and cramping in the upper stomach and lots of gas and belching
Whether taking more enzymes is any side effect their. Can a person live normal and healthy life with EPI. Can you suggest update us in mail regarding epi because we are from India. My doctor is saying that maximum enzymes may be taken 40 K per meal. Suffering severe epi, then why my attending doctor is saying that more than 40 K Lipase can not be taken per meal. Kindly advise.
You can live a healthy life with EPI. This website has guidance on dosing, as does our webinar and website. www.identifyepi.com/
@@MissionCure
I have send detailed mail to you 4 days earlier and waiting response from your end. Basically I was want to know that how much capsule should be taken to a person suffering with severe EPI since June, 2021, aged 60 years, height 165 cm and weight 60 kg. Very active life style. Outside foods totally avoided. No fats are taking. Taking 1400 to 1500 calorie intake per day. My attending doctor says that more than 40k enzymes can not be prescribed per meal and maximum enzymes can be taken 120000 (40k x 3 meal)
At present I have been prescribed 35k per meal.
Should enzymes be taken while taking fruits only?
Should fats be avoided totally?
Whether 1400 to 1500 calorie is OK for 60 years old person (weight 60 kg, height 165 cm)
Kindly advise. I will be thankful to you.
Does malabsorption cause alterations in microbiome? I mean, undigested food feeds bad bacterias?
Yes, this can happen. This is especially true for carbohydrates/sugar, which is what gut bacteria feeds off in general. If you believe this is effecting you, we encourage you to talk to your doctor about SIBO (small intestinal bacterial overgrowth), which is an imbalance of the microorganisms in your gut that maintain healthy digestion.
Creon just isn't working for me. I take 6 X 25k per meal. Yet to have a non greasy stool in 6 months of taking creon. Not once. Not matter what I eat... I'd love to try another brand because I hear some do better on one or another. No other option here in Ireland which sucks. I finish my meal in 15 minutes. Severe of FE 89
Should I just try a few days of taking 8-9 for a few days? My pharmacist is surprised it stakes I need 125-150k per meal but as stated previously. Can be formed but lots of greasy clean up 😕
On the grand scheme of things, my EPI seems very mild compared to other horror stories. Just need the grease to go.
One of the world's top experts is in Dublin. Maybe she can help. twitter.com/SineadNDuggan?s=20&t=Y4QW_l4R8x91d6jydBtWVg
What is greasy stool? Is it formed?
@@antoniocognato5023 yes. Just soft formed and greasy residue, shiney. Not dry and firm.
i'm 28 nd taking Kreon 10000 2 capsules per meal
Sir I use 1 capsule 25000 for meal 10000 for snacks but no gain weight please suggest
Apologies for the late response. We have a new web page on EPI that might have some useful information about how much to take. You can find it here: mission-cure.org/about-pancreatitis/exocrine-pancreatic-insufficiency/
hi brother
@pavanpabbireddypavanhipabbir1897
Pancreas is normal and healthy and there's no signs of like damage to it can they still have epi even with a normal pancreas
Freddy, my pancreas is normal plus blood work is normal. Stool test showed EPI. Taking CREON now.
@@1949LA-ARCH Thank you
I still could have EPI ? Something is wrong with me . Dr said IBS . The last told me no
IBS want leave your body looking like that.
I got no mass around my arm at all
Everything run in out of my body ,My stools are form fast 5 mins after I eat anything fruits, crackers and some of pills I was on
why has this become so common recently? could this be related to Covid or to Covid vaccines?
There is some research exploring the impact of COVID-19 on various bodily functions, including the pancreas. While there are indications that the virus could affect pancreatic functions, conclusive evidence is still being researched.
My stomach is in pain after takingEmzymes
We're sorry to hear that you’re experiencing stomach pain after taking enzymes. Some patients do report side effects with PERT (Pancreatic Enzyme Replacement Therapy). It’s important to work with your doctor to pinpoint the cause of the pain and see if it's related to your PERT therapy. They might suggest trying different digestive enzymes. You can also find more information on PERT dosage and possible side effects on our PERT webpage: mission-cure.org/managing-pancreatitis/pancreatic-enzyme-replacement-therapy/
Hope you feel better soon!
Is there a cure for EPI? A record of patients feeling better?
Not really a cure, but the enzymes do restore the digestive function if taken properly.
Is there a Kosher medicine for severe EPI?
The current FDA approved medications (if you are in the US) are not kosher. However, there is a product called Encala that was developed for people with cystic fibrosis and pancreatic cancer with exocrine pancreatic insufficiency. The company believes it could work for people with chronic pancreatitis. If you are interested in trying, I suggest reaching out to the company, envarahealth.com/.
@@MissionCure Thank you! It doesn’t necessarily have to be Kosher, just not made from pig pancreas. I will definitely take a look at your link & the info.
Hypoparathyroid cases epi
I have lo level of PTH hormone