Does anyone take Creon for pancreatic Insufficiency?

[Cornberry]

Ive recently been prescribed this although my elastase was 162 so not that low. I started on the 10000 pills and they said maybe increase so i went to 25k per meal and got the most horrific fatigue (am also BF) and weird sudden weight gain (water retention maybe?) on my hips so that it was painful to sleep. I was diagnosed because I have been having this problem of waking up starving in the night despite feeling full and having to be awake for hours and then getting diarrhea and panic attacks. But the dietician then said maybe it doesn't agree with you, maybe come off it... I don't know what to do. Has anyone found they needed an adjustment period? Side effects that went away? what dose do you take? Thanks. I also have MS which causes slow motility which isn't helping.

Hi OP I don’t take but prescribe creon frequently although In different circumstances (pancreatic cancer, surgery and chronic pancreatitis). There are some differences in prescribing depending on weight etc but would usually start at 50000units with meals and 25000units with snacks and dose up or down depending on response, weight etc. Generally speaking creon works quite quickly and you will see an effect as it gives you the enzymes needed to digest properly, it is generally well tolerated. Without knowing a full history it is difficult to offer advice if you are under a gastroenterologist you could always request an earlier review to see if there is anything else they can do- other investigations etc.

My son has taken creon from birth and he is 6 years old now. As pp said, he tolerates it very well but for the first couple of years we were back and forth to the dietician to adjust the dose, as he was having diarrhoea at a lower dose. Maybe it’s just a case of tweaking the dose until you feel it’s working for you.

Needmoremummyjuice they don't seem to be able to agree on a dose. Low dose doesn't seem to do anything, high dose gives me hideous fatigue. is that normal in your experience? the dietician said it was possible that my body was adjusting to a sudden absorption of nutrients... but then she said perhaps i should stop taking them. But when i took the higher dose was the only time i managed to sleep ok. Any thoughts? Trying to get appointment with consultant but it's going to be ages and meanwhile I don't know what to do!

BuyorRent thank you!

IMO 10000 units is too low to really achieve anything. This is purely anecdotal based on my experiences and not specific advice as I don't know the full history but I haven't had anyone experience fatigue that can be pinpointed only to taking creon-they are generally fatigued anyway from other health problems and the creon is treating a symptom. It is not unusual for people to not agree on dose the guidelines say things like 1-3 capsules with meals and snacks and in my experience it depends on how experienced/specialised the person you are seeing is. Essentially creon is replacing the enzymes you need to digest your food properly while your pancreas isn't providing the correct amount therefore dosing is also variable depending on the reason the pancreas isn't functioning fully/weight/diet and a few other variables. If you slept better on the higher dose and noted a decrease in appetite/loose stool I would say this is a good starting point-this is my opinion from reading your post anyway. There are some good resources on pancreas insufficiency online (NHS resources) and the creon website actually has some decent info. Good luck with getting a cons appointment as I think this will be really beneficial for you as pancreatic insufficiency is quite a specialised area.

Thanks, most grateful.

I’ve been on creon and previous to that other enzymes for nearly fifty years and I still get it wrong. It’s very much a hit and miss until you get used to it. There are signs that you get if you take too much. And more obvious ones if you take too little. I would also recommend taking a quality multi vitamin. You can pm me if you wish.

Echo PP about a good multi vitamin. We also give my son a probiotic every day too. A friend of mines son also has the same condition as my son but can only tolerate a much lower dose of Creon so it really is an individual thing.

pasithea and buyorrent curious to know what signs there are of taking too much?

Well in my son, constipation mainly.