Creons dosage advice

[25clai]

I’ve recently had a diagnosis of pancreas insufficiency via a stool test. My level was 89.

The Dr prescribed Creons, told me to take 1 or 2 per meal. It took the gp a long time to work out the prescription/ dosage. I don’t feel as if the dose he prescribed is touching the problem, although it definitely helps damp down the burning pain in my bowel. I’ve looked on the packet, but being a bit stupid with anything to do with numbers, I am confused. I weigh 60 kg and am taking the dosage as 10000 per capsule . I take 2 per meal and split up the 3rd dose into 1s , as I don’t really eat 3 proper meals a day.

I have an appointment with a gastroenterologist this week for follow up, as the gp just basically told me to take the pills and review 1 month later, without any drive to diagnose why I am in this mess, so I pushed for the referral.

I wonder if any of you can tell me what would be the right dose for my weight and height? I want to get a heads up before my appointment. I have a number of chronic conditions and have found the nhs typically prescribes the cheapest option or entry level to save cash at a GP level. I have had to fight to stay on some drugs which cost a lot, as m gp practice often decides to change my prescriptions to suit their back pocket. Usually I find consultants have the power to dictate drugs/ dosage to gps, and this is how I have managed to secure treatments/ drugs etc.

I have Sjögrens and am under a rheumatologist, who is also useful back up , but this area is not in her specialism.

Can you please advise me on dosage, plus any other questions/ diagnostic advice you can offer me?

I feel like a lot of symptoms I have re gallbladder have been ignored as I’ve had a CT scan when I was in a and E for a suspected bowel blockage, nothing showed and since then had an ultrasound of my pancreas/ gallbladder and they were clear.

Much like many of you, Ive been fobbed off in the past when I have been desperately ill, told to go away and do some yoga / it’s menopause etc,. I live with the consequences of indifference / diagnosis via CT scan or statistics . I now have long term problems and risks from a ruptured/ abcessed appendix which took 2 operations. Refusing to be discharged saved my life.

I am determined to get better treatment and diagnosis for this recent car crash of symptoms and now very cynical about the nhs service. It may well be chronic CP, but assumptions are not a diagnosis.

[Itchy-Scratchy]

ReL Creon dose, check this site. creon.co.uk/en-gb/hcp/effec... Re: symptoms, push to see a specialist in CP. Good luck.

[25clai in reply to Itchy-Scratchy]

Thanks for this. It is handy to have the info

[tomdickharry]

Dosage will vary considerably according to your diet. I suggest minimum needed to control symptoms. I'm really writing to advise you about what happened to me. After several years on Creon - and my specialist had said 'if symptoms return just increase the dose' - I developed a most severe allergic reaction to it and now can only take rather expensive herbal enzymes.

We're all different and that may not happen to you, but just letting you know it's possible.

[25clai]

thank you for warning me re side effects. I have had zero discussion with gp re my diet etc, so that is helpful to know it needs to be flexible according to diet. Signs are that the amount I’m on isn’t changing things much, still lots of pain etc etc

[Susan399]

I also have Sjoegren’s and Pancreatic Insufficiency. Creon is very expensive! In the US. It is over $3,000/month. I’m sorry if you already know this but all this was hard for me to understand and put into practice so I will tell you. I am unable to digest fat soluble vitamins. Because I have problems digesting fat I find myself having a lot of gallbladder pain if my Creon is not adequate. I have chronic Pancreatitis. I take Creon both to digest the fatty foods and aid with nutrient absorption as well as decrease diarrhea, gas, etc. My doctor prescribed 2 Creon with meals and one with snacks. CRAZY! An orange is not equal to a bag of chips and needs to be dosed differently. I forgot my lunch and had to pick up what they had at work (Mac and cheese) I took 6 pills and am pain free and out of the bathroom. It’s a lot of trial and error. It’s taken me years but I’m usually pain free. There are also different strengths

[IH8EPI in reply to Susan399]

Hi Susan,

I definitely feel your pain, as I am also a Creon user in the U.S. and cannot believe the astronomical cost of this enzyme. I was informed last April by my gastro doc, that I would be taking the highest dose available (36/114/180k), based on my weight etc. and to take 2X per meal, and 1 per snack. After doing much research, I have come to the conclusion, (in my case anyway) that depending on the amount of fat in the foods I eat, I don't really need 2X per meal. I use this formula, which has absolutely helped me with nausea, bloating, weight gain, etc. etc. .

0 - 5 grams of fat : no pills. (fruits etc.)

5 - 10 grams of fat : 1 pill

Over 10 grams of fat : 2 pills.

I have also gained back 10% of the weight I lost while being dx'ed. (70 lbs. in my case)

This is what works for me. Your mileage may vary.

I wish you good health, and the best of luck in your journey.

[25clai in reply to Susan399]

It’s really helpful to have someone with experience of this drug to detail how to manage symptoms etc. I have just had my dosage increased by about x3 as much as the dr originally subscribed and it’s still not touching the problem etc. follow up with a dietitian soon, so hopefully they can advise me sensitively, rather than the previous one who told me I was malnourished / underweight and should concentrate on eating more…lol !!

[Megan_MC Partner]

Hi! This is Megan from Mission: Cure. My brother has chronic pancreatitis (which led me to co-found this organization). Creon has to be taken a very specific way and a lot of people don't get the right instructions. We have good information on this, including a short video by Dr. Freedman from Harvard, here: mission-cure.org/managing-p....

[25clai]

thanks for this and replying