Creon enzymes

[suef]

My wonderful new consultant reassured me that I am using my enzymes correctly so I want to share this with the group. I currently take 15-20 Creon 25000 a day, though he has advised me to move to Creon 40000 so I don't have to carry so many pills around!

The enzymes have to be present in your digestive system before you start eating, so I usually take a couple a few minutes before I start my meal then continue taking them during the meal. The number I take depends on the food. If it is high fat I take more, if it is low fat I take fewer. Typically I take about 6 per meal and 2 for a snack.

It is not possible to overdose. The enzymes we take via Creon etc represent a very small fraction of the enzymes that would be manufactured by our body before the removal of part or all of the pancreas.

I hope this helps!

SueF

[Sones]

Thanks Sue, yes it does help. I take between 4 and 5 25,000 per meal and I keep thinking this is too many so feel a lot better now having read your post.

Sue

[mickal]

I have been taking creon for 7 years since my whipple procedure and cant get my head around it but it seems by your thread im not taking enough per meal I take maybe 2 25000 @ the start of the meal and thats it it seems I should be taking them thru out the meal

[WifeampMum]

Hi Mickal

I am not a medical expert, the best people to advise are the PCUK nurses who can be contacted via their helpline. But if you are taking 2 Creon with a meal my understanding is that it would be better to take one at the beginning of the meal and one sometime into the meal. The nurses can advice on timing and the right quantity depending on your own situation.

Best wishes and welcome to the forum

W&M

[WifeampMum]

Oh, and I'd be interested to hear from anyone else here who is experiencing problems getting hold of Creon 25,000. Our pharmacy has recently had difficulty getting hold of them which is a worry as my hubby needs to take 6-8 pills per meal. And it would be so much easier for him to take Creon 40,000 which haven't been available for up to a year.

[Guest]

I'll let you know W&M as I am due to pick some up tomorrow M x

[WifeampMum]

Many thanks M. I hope Louis has had a peaceful day. W&M xx

[PCUK Nurse Rachel C]

Dear All,

From what we are aware, there are still issues sourcing CREON 40,000 and as you have rightly said these have not been available for nearly a year. We are hoping that these will be available again towards the end of the year, but await confirmation for Mylan (who produce CREON).

In relation to the CREON 25,000, there was a temporary supply issue earlier in the year, but again, we believe that this has since been rectified. Therefore, CREON 25,000 should be available from pharmacies.

Saying this, we have come across some patients who are having more difficulty sourcing CREON 25,000 from smaller pharmacies or rural areas. We would suggest that you perhaps touch base with your local pharmacy in the first instance and not allow your CREON levels to drop too low...just in case there is an issue (which hopefully there wont be!).

Also, in relation to any support with taking CREON, do please phone through to us, as happy to talk through any issues (Freephone: 0808 801 0707).

Hope this helps?

Best wishes

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707

[WifeampMum]

Hi Rachel

Thanks for the info about Creon supply. We managed to get hubby's latest prescription made up at his hospital pharmacy yesterday and they confirmed that supply has improved. Interestingly they said that 50,000 pills are also available but I think this must be another brand because I can't find any reference to Creon 50,000 on the web.

Regards

W&M

[Guest]

Hi W&M,

Yes was going to reply that the pharmacy has ours too. Sadly I can't pick them up because the pharmacist was late this morning and they are not allowed to give them to me unless a pharmacist is present. We can manage until Monday but it hacked of the queue of people waiting for their methadone at 9am this morning…. M x

[PCUK Nurse Jeni]

So sorry to hear this Marmalade.

This is a shame since enzymes are not even medication.

I wonder if we can investigate anything to do with this? Leave it with us, and if I find out anything, I can get back to you.

Kind regards,

Jeni.

Pancreatic cancer specialist Nurse,

Support Team.

[Sones]

Interesting to read your post Jeni. I have recently had a stay in a general hospital and on admission my Creon was taken off me by the ward sister and locked away. I was told I could have two 25,000 caps each drug round. I tried in vain to explain how Creon works but I was firmly refused access. Two caps were left in a paper cup on my bed side table each drug round. Obviously I couldn't take them until I knew food was coming so most of the time the tabs had melted. Fortunately my hubby brought me some more in which they didn't know about.

[Dandygal76]

Sones that is awful... I always fear for those people tackling this cancer on their own and who do not have husbands etc to sneak in the right treatment. I do hope you make a complaint. I hope you are feeling better now and recovered from your hospital stay. x

Edited July 20, 2016 by Dandygal76

[RMM67]

Sones, this happened to my mother last week! Luckily a different nurse on the ward listened to me when I emphasised that she needed them on hand just in case she wanted a snack in between meals and it would save them a job if she had them on her. The nurse was really good and said that as long as they were kept out of sight (and out of other patients way just in case they get the urge to take a few!) she could keep them.

[Guest]

I've read several posts from people who were denied access to their creon so have built up a supply that can be hidden should the need arise.

It is an absolute disgrace that people who are already having to deal with a life limiting condition are having to hide essential supplements or starve or be in pain and distress.

Marmalade

[PCUK Nurse Rachel C]

Dear All,

Sones and RMM67, I am sorry to hear about your recent experiences about your CREON being taken away, whilst you have both been in hospital. I think this again (and unfortunately) demonstrates the lack of understanding in relation to CREON and how it should be taken. RMM67, I am pleased that you were able to get the nurse looking after your mother to be more accommodating, but I’m sure this must be a common problem…unfortunately.

We are aware that the NHS does need to have strict policies and procedures in relation to 'the safe administration of medicines' and yes, these policies are there to protect all patients, however, as we are all fully aware, CREON is an enzyme replacement and not a medicine, so it should not be needed to be locked away.

I guess as a way forward, if this was to happen again to anyone, would be to ask to speak with the Ward Manager and potentially also ask for the involvement of the ward pharmacist.

It would be pertinent to highlight:

CREON is an enzymes replacement and not a medication. I know that we are stating the obvious here, however, depending on the type of ward that you (or a loved) on is on, may very well on their level of knowledge or experience in relation to CREON.

Also highlight the potential effects for you, should you not receive your CREON with your food and how this could be avoided, if you were to keep your CREON in a bedside cabinet.

Ask if the hospital has a policy on ‘self-administration of medications’. Some hospitals do have policies and procedures in place, whereby patients can still take or ‘self administer’ their own medication and a locked cabinet is part of the bedside locker to facilitate this.

Ask the ward staff (in the nicest possible way), if they can guarantee, that your CREON will be administered exactly when you need it? If not, since it’s not medication, that you are more than happy to keep it safe in your bedside locker, for their convenience.

As I mentioned above, the NHS does need to have policies and procedures in place to protect patients, however, if these are at the detriment of yourselves or your loved ones, then it is certainly worth challenging them.

I do think that by raising this as an issue, will hopefully in turn raise awareness, open discussion and debate at the clinical bedside (ever the optimist!) and hopefully change practice!

Thank you everyone for posting and do keep sharing your experiences!

Rachel

Pancreatic Cancer Specialist Nurse

Support Team

Pancreatic Cancer UK

email: support@pancreaticcancer.org.uk

support line: 0808 801 0707