Creon dosing - please help!

[Nikki81]

Hi everyone,

I’m hoping you can help me. I’ve been an insulin dependent diabetic for 20 years caused by calicification of the pancreas. About 4 months ago I was confirmed as having severe pancreatic insufficiency. Fecal elastase 8. I’ve been on Creon which seemed to work well for 3 months. I moved to 2x 25000 for main meals and 1x 25000 for snacks. Total of 6 Meals per day very low fat 40g. I was on 225000 Creon a day. I lost alot of weight and now weigh 45kg. Also taking a PPI.

Since last month something has changed and I’m struggling to keep the weight. I’ve upped my Creon to 300000 per day and now even further to 340000 but still having issues. I’m on 70000 for main meals and 45000 for snacks.

I’m unsure what classifies as a snack. Is it a biscuit or something more substantial. I usually have half a meal replacement shake and two small pancakes as a snack. Perhaps this is more than a snack.

I’m so confused. One doctor said my dose is too high for my weight and what I’m eating (1900 calories per day) and other doctors say you can’t take enough Creon.

Please can you help me. I don’t know what to do. Thank you.

 

[Jaylee]

Hi everyone,

I’m hoping you can help me. I’ve been an insulin dependent diabetic for 20 years caused by calicification of the pancreas. About 4 months ago I was confirmed as having severe pancreatic insufficiency. Fecal elastase 8. I’ve been on Creon which seemed to work well for 3 months. I moved to 2x 25000 for main meals and 1x 25000 for snacks. Total of 6 Meals per day very low fat 40g. I was on 225000 Creon a day. I lost alot of weight and now weigh 45kg. Also taking a PPI.

Since last month something has changed and I’m struggling to keep the weight. I’ve upped my Creon to 300000 per day and now even further to 340000 but still having issues. I’m on 70000 for main meals and 45000 for snacks.

I’m unsure what classifies as a snack. Is it a biscuit or something more substantial. I usually have half a meal replacement shake and two small pancakes as a snack. Perhaps this is more than a snack.

I’m so confused. One doctor said my dose is too high for my weight and what I’m eating (1900 calories per day) and other doctors say you can’t take enough Creon.

Please can you help me. I don’t know what to do. Thank you.

Hi @Nikki81 ,

Welcome to the forum.

Our forum rules prohibit members giving dosage advice.

I do know know of one member @plantae similarly diagnosed taking creon who may be able to help regarding personal experience?

Best wishes.

 

[plantae]

I'd be asking my Doctor (see other thread), or a specialist. There is a maximum recommended daily dosage of creon even though it may seem a relatively benign substance, and this maximum is based on your weight so the doctor who suggested you might be taking too much for your weight might be correct. Maybe see a third doctor because the doctors who are saying "you can't take enough Creon" are, based on my understanding, incorrect.

https://link.springer.com/article/10.1007/s11894-999-0040-4 (also read the wikipedia page on Creon)

 

[plantae]

I'm not recommending doses here but trying to define a "snack".

If my biggest meal of the day is 3000 kJ and my doctor has said that I need 3 x creon for that meal (I'm about 90 kg) then I set that as my baseline. If my snack was 1000 kJ (which is 10x the size of my normal snacks) then I'd divide my creon by 3... so 1 capsule. If my snacks are 500 kJ which they usually are then I'd, hypothetically, "need" 1/2 a capsule which is not possible unless you crack it open and I don't know if that's safe! So I don't have Creon for my usual snacks. What I'd do is record my energy (in kCal or kJ, doesn't matter) intake for the biggest meal of the day for maybe 3-4 days. I'd also record how much energy my snacks have over those same days. I'd take those numbers to my doctor and explicitly ask (as an example) "On average I'm eating 3000 kJ for dinner and 1000 kJ as snacks; how much Creon should I have for those snacks and when should I not have Creon?"

I think your example is difficult because your snacks are large in my opinion. I know you're trying to gain weight and I'm not being critical. They're basically meals, so it's hard to say. Actually, maybe write down the kCal for all your meals for a few days and take that along with you for your next consultation. I personally don't think that self-adjusting dosages by the amounts stated is a good idea and I don't even know if it will help you gain weight -- Creon isn't a weight gain drug it's more about your body getting the micronutrients that it needs from the fat, protein and carbs in your diet