To Sonja re Creon

[Guest guest]

Hi Sonja!

Hope you are able to enjoy the holidays a little despite illness. I

had a very bad day on Christmas Eve but things have got better each

day since!

Well, you know, I think here we just have different medical

opinions. I do know that some of the leading pancreas specialists

advocate high doses but other doctors take the view of your doctor.

I can just tell you my experience. The gastroenterologist originally

prescribed 2 x Creon 10000 per meal but said I could take more if

needed and, if so, he would presribe Creon 20000 instead, just for

convenience. At the same time, he referred me to the pancreatic team

at the same hospital (Royal Liverpool Hospital). A few weeks later I

saw Professor Neoptolemos. He is a world-class pancreas specialist.

He immediately raised the dose and said I could take up to 3 or even

4 x Creon 40000.

I know this is relatively unusual, from what I read on this board,

for example. However, I have certainly read of other leading

specialist pancreatologists who advocate high doses. I get the

impression that it's the latest thinking for some of them.

And what about my own feelings? Well, as I've often said, when I

first started taking Creon, I experienced awful abdominal cramps,

different from the usual pancreatic pains. However, even then, the 2

x Creon 10000 did have an effect in controlling diarrhoea and

steatorrhoea. It was about the time I saw Prof that these cramps

eased off, presumably because my body had adjusted to the medication

by then. I continued to improve and even the upper-abdominal pains

lessened, I think because Creon " rests " the pancreas as it helps so

much in the digestion process.

It is difficult for me to say for sure that the higher doses were

significantly better than the lower doses because I was going

through the painful adjustment process anyway while on the original

lower doses! Since I have done pretty well on the higher doses, I

have never tried going back to lower doses! Therefore, I'm afraid I

can't give you a definite answer from my own personal experience

but, on the whole, I think I do well on my current dose. Prof

Neoptolemos must have good reasons for prescribing higher doses but,

as we know, docs have different opinions! I naturally follow my

specialist pancreatologist's advice on this.

However, I think it's important to recognise two points :

(1) Taking Creon, even high doses, does not enable me to eat exactly

what I like. I still have to eat low-fat and fairly small meals. My

experience through the support boards and personal contacts I have

with CP sufferers leads me to believe that many CP patients find

this to be the case. Creon isn't a passport to a fully normal diet.

(2)I still have bad days from time to time and bad hours on " good "

days! Overall, my pain levels are lower and attacks less frequent

and disabling. I still use Cocodamol (codeine and paracetamol)

tablets to help with pain.

I usually take 3 x Creon 40000 with a full meal, 4 if we're eating

out and it's a bigger meal than usual. With breakfast I take 2 x

Creon 40000. If I just have a banana or other small snack during

the day, I take 1 x Creon 10000.

I hope that helps! Have you asked your doc if it would be OK for you

to at least try the higher dose?

I wish you a very Happy New Year and an improvement in health.

With very warm wishes,

Fliss (UK)