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Creon Shortage

O

Oli

New Member
Relationship to Diabetes
Other Type
This has been going on for nearly two years and, for many of us needing to take Creon on a daily basis multiple times, can be quite stressful as we have to search online for Creon from suppliers all over the world. The cost of this can be £70+ depending on the supplier and can lead to the buyer taking the risk of purchasing from an unverified source-I once bought a box from Ebay which, although fine, could have been anything. Although there are alternative they too are in short supply. I'm fortunate that I can pay for a box of 100 but it would get very difficult if I would have to have the dose raised.

Is there any support for people effected by the matter?

www.bbc.co.uk

'He'll be dead by then' - fears over pancreatic cancer drug shortage

The wife of a Lincolnshire cancer patient says a shortage of Creon is a "life and death" issue.
www.bbc.co.uk www.bbc.co.uk
 
Get my Creon on prescription, there are times in last couple of years where there's been delays due to shortages as pharmacy struggles to obtain some, last few prescriptions have been fine though with no problems.
 
I get mine on prescription also but have had to buy several times recently because of the shortage.
 
Sorry to hear you’ve had to resort to buying Creon as your supply on prescription has been a bit patchy :(

If I remember right @eggyg had a real struggle at one point, and was right down to the wire. @Proud to be erratic @soupdragon @martindt1606 and @Wendal are also forum Creonistas who may have experiences to share.
 
At the end of last year I had 4 months in a row where my prescription for creon was fulfilled without delay. January and February the prescriptions needed 2 visits to the pharmacy which I thought was probably due to Christmas and New Year. A couple of weeks ago I had a reply from my MP (to a charity letter) and he said that the manufacturer had increased production and supply to the UK, and he also stated that creon would no longer be split between the 3 wholesalers with the NHS having selected one of them to distribute creon to pharmacies. When I submitted my repeat for March I therefore expected it to be ready within days……15 days (and counting) later I have received no Creon. Not sure how improving supply and distribution can result in worse outcomes.
 
Oli said:
This has been going on for nearly two years and, for many of us needing to take Creon on a daily basis multiple times, can be quite stressful as we have to search online for Creon from suppliers all over the world. The cost of this can be £70+ depending on the supplier and can lead to the buyer taking the risk of purchasing from an unverified source-I once bought a box from Ebay which, although fine, could have been anything. Although there are alternative they too are in short supply. I'm fortunate that I can pay for a box of 100 but it would get very difficult if I would have to have the dose raised.

Is there any support for people effected by the matter?

www.bbc.co.uk

'He'll be dead by then' - fears over pancreatic cancer drug shortage

The wife of a Lincolnshire cancer patient says a shortage of Creon is a "life and death" issue.
www.bbc.co.uk www.bbc.co.uk
Click to expand...
Hi and sorry you have been having problems getting Creon and there have been issues in past but like Martin the last 12 months have had no issues getting it.
Having said that I have not tried to get any the last month or so it may be that supply is difficult but am managing fine atvthe moment just getting my prescriptions.
 
Overall I've been OK, getting my prescription fulfilled pretty well 100%, even it it's come to me in small quantities spread over 3+ weeks.

I've always told the pharmacy (Tesco) when it's not been fully available, that I'm able to return to collect some more and the important thing is that they should fulfil my script request - even if that takes more than 4 weeks; just add my shortfall to my next request and DON'T cancel outstanding unfulfilled Creon requests. I've found until now, the bulk purchasing power of Tesco Head Office seems to be able to meet demand eventually. The big drawback for me individually is that the Tesco pharmacy runs late hour opening, so there are often different pharmacists on duty and I have had to tell each of them that I must get my prescription, without fail. Continuity isn't great, sometimes!

I asked my GP Surgery's pharmacist to add the smaller 10k capsules to my repeat prescription and I've accepted 25 x tubs of 10k, in lieu of 10 x 25k tubs on a couple of occasions. It's a bit of a nuisance, but workable overall. Since I always need some Creon, even with a small milky coffee, I find I can make small savings with my total monthly consumption. Previously I would have 1 x 25k capsule with a small fatty snack (eg a small pot of yoghurt, or that milky coffee with double cream) and now I manage with 1 x 10k capsule instead.

I also now have a different brand of PERT on my repeat prescription list; Nutrizym 22 gastro-resistant capsules (Zentiva Pharma UK ltd). I haven't had to call for this yet, but the possibility is there. The script says to be provided as an alternative if Creon shortages exist. This should be adding a "backstop" supply of PERT for me.

I'm curious @Oli about what sort of quantity of Creon you normally need? My usage is 1,000 capsules of 25k strength monthly (ie 10 tubs). My gastroenterologist light heartedly says I take Creon in industrial quantities. Since the shortages, I have reduced my need a little, so I have recently started to slightly stockpile a buffer reserve and this month my repeat request will be 6 weeks since my previous request. I'm anticipating letting my reserves run down slightly; I certainly now have a full month's reserve. In spring '24 my Diabetes Consultant wrote a script for the Hospital to provide me a one month supplement, which was fulfilled that day and helpfully created that buffer (reserve).
 
I tried to pick up Creon today (only requested it a few days ago but had to pick something else up so I thought I'd see if it was available). They had 10 000s but not 25 000s. My repeat prescription is for 25 000s so it would have meant reissuing the prescription. I've left it for the moment as I've still got some left. I was told that they're phoning the stockists twice a day at the moment.
They also mentioned Nutrizym, so presumably that has started to become available again.
Last time I got hold of Creon 25 000 I was told that I was very lucky to get any!
Things are certainly better than they were last summer around here for Creon availability but still not great.
Interesting that you've got the 10 000s and Nutrizym on your repeat as well @Proud to be erratic . I spoke to the pharmacy department at the surgery about that last year. At the time it was really hard to get hold of anything so they weren't keen but perhaps it might be useful now.
 
After a slightly "bumpy" introduction to my (then) new GP Surgery and a tortuous prescription review as a new patient, I was fearing a difficult time ahead. But my 2nd phone conversation went extremely well and then the Creon phone call was, frankly, illuminating. I ended up with everything I asked about, including the Nutrizym. I had pointed out that it was pretty stressful having to hunt all local pharmacies for Creon and suggested that shouldn't be wholly my responsibility; I was prepared to do my part in making sure I stayed alive - but the Surgery ought to be on the case: both in passing up the NHS chain that there were real supply problems and in helping me find solutions.

And they did. With my 4th conversation I was able to say thank you.
 
It is a pain with the shortages... I've been affected since late 2019 with shortages when I was in London. Out in rural Suffolk it actually seems to be better and I have not had to wait longer than about 15 days. I took have had to limit food and change diet when it got rough, but I make sure I put my prescription order in on time even if I have several bottles left. My pharmacy is run by a private practice and they try very hard to make sure they have them in stock for us... There's a few people on creon in out village.
Hope you get yours sorted quickly
 
@everydayupsanddowns is correct, last year I had to cancel a holiday to Madeira as it was looking like I wouldn’t have any Creon by the time it came to going in October. I didn’t want to spend my whole holiday trapped in my hotel room to be close to a loo! Fortunately, but annoyingly, the supply seems to have sorted it self out somewhat and I now have a surplus and didn’t reorder last month after reading about the new UK supplies. It was a bit scary but I didn’t want to stockpile because of folks like yourself who are facing such awful shortages. I have various gastric problems which add to my problems and at one point in all this “carryon” my GP surgery were talking about feeding me intravenously if the supply stopped all together! It was a very stressful time I must say.
I hope you get sorted soon, in the meantime, if you DM me I can send you a few tubs.
 
Last edited:
nonethewiser said:
Get my Creon delivered, one thing I've learned is not to order other prescription items at same time if there is delays in obtaining Creon, for whatever reason pharmacy waits till Creon arrives before delivering all items requested.
Click to expand...
I've never had that problem, in fact the polar opposite. I received the "your prescription is ready" text on Monday and when I went to collect they had all the other items plus one box of creon and a note to say they owe me 20 boxes.......
 
I had real issues last year and resorted to sending paper scripts to friends around the country who would hunt it down for me. Newcastle in particular seemed to have a ready supply. A thank you to the GP who was happy to supply me with lots of prescriptions for this tactic although that may have been after the hospital pharmacy ran out which was her plan B.

This year has been much better and my local pharmacy has met my last three prescriptions in reasonable time. This week they'd even ordered it in for me before I'd got the prescription organised. From what they've said this is down to the change in wholesale suppliers as they normally only deal with one which didn't seem to get Creon at all. I also have a backup prescription for Pancrex although not seen any of that for some time and it had to be kept in the fridge.

I'm currently taking around 20 a day which is probably a bit low but don't quite feel confident enough to up that yet as the ready supply may not last.
 
I have rather smugly been thinking the Creon shortages had at least rescinded, if not completely gone away. It seems I'm wrong.

My prescription requests are provided by Tesco Pharmacy and until today they have successfully sourced Creon, albeit sometimes in different amounts through the month. Last month and now this month they have not been able to provide any Creon - neither in 10k or 25k capsules. They have advised me that Tesco Head Pharmacy Office has confirmed they have no solution and I should go back to my Medical Practice for resolution. So a fresh search must start in earnest tomorrow or first thing Monday.

I do have some reserve stock, but with no supply for 2 months I'm feeling a bit vulnerable. I have been scaling down my consumption and that has given me unwanted bowel problems. It's a bit of a guess how long my reserve will last, because of trying to accept reduced usage; no PERT at all would not be imaginable, never mind being completely intolerable. Finding a balance between lower fat foods, tolerating some bowel challenges and becoming very housebound makes gauging when I could totally run out pretty much an impossible task.

Is anyone else detecting Creon or any PERT supply problems returning?
 
Bit like you I thought the shortages were a thing of the past or at least it was delays of days rather than months but my current order has been outstanding for some time. I use a small local pharmacy and they always complained that their purchasing power meant they sometimes got over looked so the fact they'd fulfilled my last couple of prescriptions pretty quicky had suggested things were looking up. Annoyingly I've used a lot of my reserve to actually take the full amount of Creon I actually need rather than reducing it and accepting the problems that causes so starting to get a bit nervous.
 
I picked up Creon a few weeks ago and it's the first time in nearly two years that I have been given the full amount at first time of asking.
I've resorted to only eating once a day as worried about running out.
Previous prescription took 4 months to fill.
 
Last month my pharmacy had a 1 week delay for half my Creon and then 2 weeks later for the rest. When I put in this month's I was expecting the same (I have 1 month extra supply) but I got it immediately. Pharmacist said is was still the stock which had come in to fulfil my last month... I have cut out as many snacks as possible to build up my supply. I'm just starting up with the snacks again now 😛
By all accounts I think I have been very lucky compared to many!
 
@Standup, @Pumper_Sue and @djdave, thank you for your updates. I've found out I can't make any progress with this tomorrow, so I'll explore what I can on Monday and advise the forum during next week - once I have something useful (or not) to tell you.
 
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