Creon - am I taking too much or too little?
Hi - pancreatic cancer person here. (Surgery 14 years ago removed tail, recurrence on head a year ago, currently in remission after treatment including hi-dose radiation.) Started Creon several weeks ago. I THINK I am taking enough as I am finally putting weight on, stools are proper color etc. But I am quite bloated with distended belly and a bit constipated. If everything else is good could this mean I'm not taking enough? Or does constipation with normal stools mean I'm already taking too much?
I take 36,000 with my smallish calorie-dense meals, my weight is 108. The PERT calculator indicates I need closer to 48,000 at breakfast but other meals I'm in range.
Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.
Hi, @stillaround. I love your name!!
The Creon medication website says this….
Talk about symptoms with your doctor
During your first few weeks taking CREON, keep track of any symptoms you’re experiencing with the Treatment Tracker, and share this information with your doctor at your next in-person or telehealth appointment. Be sure to also let your doctor know about any changes to your diet or weight. These details will help your doctor determine if your dose needs to be adjusted.
-Treatment Tracker form: https://www.creoninfo.com/content/dam/creon/pdf/creon-treatment-tracker.pdf
I add my welcome, @stillaround. I agree with @jlharsh to mention the side effect on constipation to your doctor or symptom management nurse.
I've moved your question to the Pancreatic Cancer support group and am tagging fellow members like @howleegirl @matt2024 @jeeplewis @scooter369 @sonomaga @suze22 who can share their experiences and tips on pancreatic enzymes and Creon with you.
My understanding is that if you have PC your pancreas may not be putting out enough enzymes to properly digest food. My wife has the same situation and she is beginning to take Creon. We have been assured that there is no harm in doing so and possibly some upside. The constipation / diarrhea cycle seems to come with Chemo and the additional meds and takes some trial and error to find what works for each person. Keep me posted as to how you do. IMO, the less laxatives the better.
This topic is so confusing, I would like to know the correct amount of the enzymes to take also. They upped my dosage as I was not gaining weight, but I think I’m now maintaining so that’s better than continuing losing - starts to feel like I am just going to fade away when it’s a lower # every time I am weighed (I am 5’ 7” and I weight 109 or so now). But when they upped my dosage (I was taking ZenPep, 20,000 IUs at meals, 10,000 for snacks) they okayed me to order a different, OTC med - Vital Nutrients, so take one of these at my three main meals along with the ZenPep. Much cheaper, $40/month. Now I am wondering what is the difference? - if much - between the ZenPep and cheaper OTC med? I wouldn't have known about the OTC cheaper med if the Dr hadn't recommended it, so they must have some faith in it. Hard to find answers for these medications. And is there much difference between Creon and ZenPep? I think Creon may be more expensive than ZenPep, I pay $194/month from the hospital mail order pharmacy - I’ve seen much higher $$ for both, the mail order option helps us (initially was paying $394/month).
@katieliz There is an on-line PERT dosing calculator that will easily calculate the amount of pancrealipase required based on the amount of fats, carbohydrates and protein being consumed for a specific meal. Go to pertcalculator.org to set up a free account and use the calculator. Often times, what is written on the Rx bottle is insufficient for a given meal.