Creon

[The robin]

Hi all ,hope you’re all well and enjoying the bit of summer we’re getting.
I’m type 3c, no pancreas and so I’m on the enzyme supplement creon. 25000 one for meals and the 10000 for snacks. Unfortunately, the 25000 is out of stock everywhere,so I’m having to double up using the 10.000 one,which isn’t ideal .
Going away at the weekend for 2 weeks so it’s been a bit of a nightmare sourcing it all. I’ve requested my doctors surgery to see if there is an alternative to use as this isn’t the first time this has happened. Just wondered if anyone else is on a different one.
Judy

 

[nonethewiser]

Think there only is Creon, got prescription 4 weeks back for 25k capsules & it arrived fine, guess you'll have to double up for now, enjoy your hols.

 

[martindt1606]

Hi all ,hope you’re all well and enjoying the bit of summer we’re getting.
I’m type 3c, no pancreas and so I’m on the enzyme supplement creon. 25000 one for meals and the 10000 for snacks. Unfortunately, the 25000 is out of stock everywhere,so I’m having to double up using the 10.000 one,which isn’t ideal .
Going away at the weekend for 2 weeks so it’s been a bit of a nightmare sourcing it all. I’ve requested my doctors surgery to see if there is an alternative to use as this isn’t the first time this has happened. Just wondered if anyone else is on a different one.
Judy

Judy

I also have no pancreas and consume 60-70 25000 Creon per day. These stories occur on a regular basis and as a large user I really need to have confidence in my supply chain. When my pharmacist claimed there was a shortage earlier in the year I asked them to confirm that with viatris - 01707 853 100. They confirmed there was no shortage and every 28 days i now pick up my 18 pots with no issue. Having seen a similar story earlier in the week I called Viatris and again this is not a manufacturer issue. If you can't switch pharmacy demand that your pharmacist calls viatris, in front of you, to prove that there is a shortage. Internal ordering processes and issues with a wholesaler is not a shortage of stock.
would love to send you a couple of pots but probably too late.

 

[The robin]

Judy

I also have no pancreas and consume 60-70 25000 Creon per day. These stories occur on a regular basis and as a large user I really need to have confidence in my supply chain. When my pharmacist claimed there was a shortage earlier in the year I asked them to confirm that with viatris - 01707 853 100. They confirmed there was no shortage and every 28 days i now pick up my 18 pots with no issue. Having seen a similar story earlier in the week I called Viatris and again this is not a manufacturer issue. If you can't switch pharmacy demand that your pharmacist calls viatris, in front of you, to prove that there is a shortage. Internal ordering processes and issues with a wholesaler is not a shortage of stock.
would love to send you a couple of pots but probably too late.

I take 9 -25,000 a day and 6 -10.000 a day, out of interest how come you have to take so many.
Been and picked up 7 bottles of 10. 000 today so thankfully will be okay whilst away. The pharmacy were on the phone to their supplier and they said phoenix are merging 2 depots which has caused issues. My doctors pharmacy team have got in touch with my consultant to request if there is an alternative,so will see what happens there.
Judy

 

[martindt1606]

I take 9 -25,000 a day and 6 -10.000 a day, out of interest how come you have to take so many.
Been and picked up 7 bottles of 10. 000 today so thankfully will be okay whilst away. The pharmacy were on the phone to their supplier and they said phoenix are merging 2 depots which has caused issues. My doctors pharmacy team have got in touch with my consultant to request if there is an alternative,so will see what happens there.
Judy

I’ve used creon (6 month break on Nutrizym) since 2003. I was low constant usage until the TP after which the number per meal increased every 6 months or so. Consultant doesn’t question how many I take - I know what “consistency” to look for. GP isn’t happy when I ask to increase the prescription but always agrees when I offer to send him some photos of why I need more. As mentioned there are 3-4 different PERT options but be careful as they have slightly different make ups. For example with Nutrizym I had to take an extra capsule.
Are you on Facebook? There it’s group called total pancreatectomy uk. It’s a very small group although (unfortunately) we’ve had more new members this year than in the previous 3 years since I joined. We had this creon discussion on Monday. ADMIN - hope this last paragraph is ok. Understand if you delete it.

 

[Proud to be erratic]

I take 9 -25,000 a day and 6 -10.000 a day, out of interest how come you have to take so many.
Been and picked up 7 bottles of 10. 000 today so thankfully will be okay whilst away. The pharmacy were on the phone to their supplier and they said phoenix are merging 2 depots which has caused issues. My doctors pharmacy team have got in touch with my consultant to request if there is an alternative,so will see what happens there.
Judy

Judy,

I take c. 30 x 25k capsules daily, receiving 10x pots of 100 monthly, which slowly accumulate until I can skip a month's repeat supply. I have always understood we need what we need, as is also often stated in connection with insulin. My Gastrologist wrote a Report saying I took Creon in industrial quantities; he'd clearly not met @martindt1606 !

In about Feb 2021 there was a SE wide problem with Creaon supply and at that time the NHS had a total of 4 different types of PERT; all capsules and superficially sounding similar. At that time I had something called Pancrease; the capsules were a little larger and I didn't like their taste - but they worked. Then Creon supply was restored and Creon supply has not been a problem since.

The Pancreatic Cancer UK site tells me there still are 4:
The brand names are Creon®, Pancrease®, Nutrizym®, or Pancrex®. (NB @nonethewiser).

Hope you have great weather for your fortnight away.
Regards, Roland

 

[martindt1606]

Judy,

I take c. 30 x 25k capsules daily, receiving 10x pots of 100 monthly, which slowly accumulate until I can skip a month's repeat supply. I have always understood we need what we need, as is also often stated in connection with insulin. My Gastrologist wrote a Report saying I took Creon in industrial quantities; he'd clearly not met @martindt1606 !

In about Feb 2021 there was a SE wide problem with Creaon supply and at that time the NHS had a total of 4 different types of PERT; all capsules and superficially sounding similar. At that time I had something called Pancrease; the capsules were a little larger and I didn't like their taste - but they worked. Then Creon supply was restored and Creon supply has not been a problem since.

The Pancreatic Cancer UK site tells me there still are 4:
The brand names are Creon®, Pancrease®, Nutrizym®, or Pancrex®. (NB @nonethewiser).

Hope you have great weather for your fortnight away.
Regards, Roland

Industrial? Just pleased I don’t have to pay for them.
When I had to switch (probably the same time) I was only given the Nutrizym option. Although the other two begin Pan I was told that they were more suitable for bowel conditions than pancreatic conditions….
PS I did once have a “chat” with someone taking over 90 a day.

 

[The robin]

Oh my, I’ve started something now. Still can’t understand why some people have to take more than others, very confusing.

 

[The robin]

Judy,

I take c. 30 x 25k capsules daily, receiving 10x pots of 100 monthly, which slowly accumulate until I can skip a month's repeat supply. I have always understood we need what we need, as is also often stated in connection with insulin. My Gastrologist wrote a Report saying I took Creon in industrial quantities; he'd clearly not met @martindt1606 !

In about Feb 2021 there was a SE wide problem with Creaon supply and at that time the NHS had a total of 4 different types of PERT; all capsules and superficially sounding similar. At that time I had something called Pancrease; the capsules were a little larger and I didn't like their taste - but they worked. Then Creon supply was restored and Creon supply has not been a problem since.

The Pancreatic Cancer UK site tells me there still are 4:
The brand names are Creon®, Pancrease®, Nutrizym®, or Pancrex®. (NB @nonethewiser).

Hope you have great weather for your fortnight away.
Regards, Roland

Hi Roland, good to hear from you, hope you’re well. I’ll await what news I get from my consultant. It’s only ever been the 25.000 ones that I’ve struggled to get hold of .
It will be very hot in Sicily.

 

[The robin]

I’ve used creon (6 month break on Nutrizym) since 2003. I was low constant usage until the TP after which the number per meal increased every 6 months or so. Consultant doesn’t question how many I take - I know what “consistency” to look for. GP isn’t happy when I ask to increase the prescription but always agrees when I offer to send him some photos of why I need more. As mentioned there are 3-4 different PERT options but be careful as they have slightly different make ups. For example with Nutrizym I had to take an extra capsule.
Are you on Facebook? There it’s group called total pancreatectomy uk. It’s a very small group although (unfortunately) we’ve had more new members this year than in the previous 3 years since I joined. We had this creon discussion on Monday. ADMIN - hope this last paragraph is ok. Understand if you delete it.

Hi, no I’m not on Facebook but Thankyou for the information.
Judy

 

[nonethewiser]

The Pancreatic Cancer UK site tells me there still are 4:
The brand names are Creon®, Pancrease®, Nutrizym®, or Pancrex®. (NB @nonethewiser).

So those are available on nhs prescription?

Only ever was offered creon but suppose they all do same thing.

 

[Pumper_Sue]

Oh my, I’ve started something now. Still can’t understand why some people have to take more than others, very confusing.

Like insulin we all take different amounts 🙂

 

[Proud to be erratic]

Oh my, I’ve started something now. Still can’t understand why some people have to take more than others, very confusing.

Yes, I think it's interesting - in that all 3 of us have no pancy; so even allowing for difference in weights, age (perhaps), and some internal rearrangements post surgery the variation does feel unusual. Types of diet variations will play a part. But I guess it's predominantly down to our metabolic processes being very different - but why? [ Rhetorical question!]

I was diagnosed with Ulcerative Colitis in 2004, something I felt I'd had since a teenager but nobody would help me with in the '60s and then those sort of things were never discussed in the male circles I moved within. One just worked around the consequences and to some extent assumed that others were quietly struggling as well. So that might account for my difference, perhaps? But I've had colonoscopys in recent years and had diagnoses of remission and now post UC; so that doesn't really provide an explanation.

Hi Roland, good to hear from you, hope you’re well. I’ll await what news I get from my consultant. It’s only ever been the 25.000 ones that I’ve struggled to get hold of .
It will be very hot in Sicily.

And good to hear from you. I'm doing fine, thanks.

After a couple of years with Libre 2 as a consistently unreliable CGM I've now tried Dexcom One; this was a bit better. But I'm currently trying Dexcom G7, self financed, which is very much better for accuracy and consistency. I often don't even feel the need to finger prick once a day, unless it's a "silly" day, which still occur more frequently than I would wish. I have been amazed at how much better life can be with a CGM that doesn't need 2nd guessing before every single bolus! I'm supremely well looked after by the Head of Oxford Centre for Diabetes, Endocrinology & Metabolism (OCDEM) and know I'm very fortunate. A discussion is now in its infancy about getting a pump, for which I just don't qualify in the terms of NICE. Anyway, that is work in progress.

Have a great holiday. Roland

 

[The robin]

Yes, I think it's interesting - in that all 3 of us have no pancy; so even allowing for difference in weights, age (perhaps), and some internal rearrangements post surgery the variation does feel unusual. Types of diet variations will play a part. But I guess it's predominantly down to our metabolic processes being very different - but why? [ Rhetorical question!]

I was diagnosed with Ulcerative Colitis in 2004, something I felt I'd had since a teenager but nobody would help me with in the '60s and then those sort of things were never discussed in the male circles I moved within. One just worked around the consequences and to some extent assumed that others were quietly struggling as well. So that might account for my difference, perhaps? But I've had colonoscopys in recent years and had diagnoses of remission and now post UC; so that doesn't really provide an explanation.

And good to hear from you. I'm doing fine, thanks.

After a couple of years with Libre 2 as a consistently unreliable CGM I've now tried Dexcom One; this was a bit better. But I'm currently trying Dexcom G7, self financed, which is very much better for accuracy and consistency. I often don't even feel the need to finger prick once a day, unless it's a "silly" day, which still occur more frequently than I would wish. I have been amazed at how much better life can be with a CGM that doesn't need 2nd guessing before every single bolus! I'm supremely well looked after by the Head of Oxford Centre for Diabetes, Endocrinology & Metabolism (OCDEM) and know I'm very fortunate. A discussion is now in its infancy about getting a pump, for which I just don't qualify in the terms of NICE. Anyway, that is work in progress.

Have a great holiday. Roland

It is very interesting,how some things work for some and not for others. I’ve been on libre 2 for 18 months now and get on absolutely fine with it. I can sometimes go 6-7 days and not even finger prick.
The only problem I’m having now is scar tissue which is either sticking to my stomach wall or my bowels,they’re not sure. Just had a steroid injection this week to see if it helps but the consultant has said if it’s sticking to the bowels then there is nothing they can do, so time will tell. I also feel very fortunate in the fact I am very well looked after,regular phone sessions/meetings with my DN and my doctor is very understanding.
Judy

 

[eggyg]

@The robin I had a distal pancreatectomy in 2007, my remaining bit of pancreas is now atrophied. My Creon use has changed massively over the years. Back in the “ olden” days you could get 40k capsules, remember those @martindt1606? Before my op I only took 10k per meal. After my op I took 1/2 40k per meal, that would change as time went on. When they stopped manufacturing the 40s I took up to 6 x 25k per meal. Fast forward a few years to 2021 and I had a emergency bowel obstruction and it was found I had adhesions wrapped around my small intestine. Caused by the scar tissue from my two big operations. I now only take one 25k per meal after much trial and error and balancing the twin evils of diarrhoea and the worry I could have another bowel obstruction and not being so lucky next time. The consultant tried to persuade me to take at least two. I refused and he accepted that. It was scary at first cutting down on the Creon but I follow a low residue diet, as much as I can, and on the whole, if I’m careful and eat small meals I manage. I do have my moments though. 😱 I find the gastric problems much, much harder to cope with than the diabetes.

I now don’t need to order Creon as often as I did, and up until yesterday hadn’t ordered any for months as I had a huge back log. I will find out next week if there’s a shortage.

 

[martindt1606]

@The robin I had a distal pancreatectomy in 2007, my remaining bit of pancreas is now atrophied. My Creon use has changed massively over the years. Back in the “ olden” days you could get 40k capsules, remember those @martindt1606?

@eggyg I think I only ever had 2 bottles of 40k Creon - whilst I can swallow 2 25k at a time i did struggle to swallow one 40k. When sitting at the table with 18 * 25k capsules I do think 40k would be worth trying again....