Anyone facing a Creon shortage?

[PrincessOlga]

I need to take digestive enzyme tablets (Creon 25,000), as my pancreas does not produce enough enzymes to properly digest food. Right now, there is a shortage (manufacturing problems) which is due to last until next year!

The problem is that substitutes are also being snapped up and my pharmacist at my GP surgery told me that they aim instead to try to control the adverse symptoms (bloating, diarrhoea) until the situation eases. However, this does not solve the problem of not being able to absorb required nutrients long-term, which is not ideal.

I wonder if anyone finds themselves in the same boat? Have they been able to find Creon recently or even a substitute? I have seen things for sale like Holland & Barrett's Enzyme Formula 90 Tablets, but I would be very wary of buying anything not prescribed for me by a doctor.

I see no-one replied to you PrincessOlga. How have things been for you since you posted?

My DH takes Creon as he had a distal pancreatectomy, and the situation is getting quite worrying. There are no alternatives because all pancreatic enzyme replacements are in short supply.

Yes my sister. She has been prescribed the higher does tablets as I think these are easier to source but she did have to ring around a few chemists to get her last prescription.

I take Creon 25000.

I got half of my last prescription and I cut down on the amount I take per meal to try & eke them out because I didnt know when Id be able to get more. The effects of cutting down are not pleasant and I take Immodium and Codeine to try & slow down my digestive system a bit - with a varying degree of success. I have real anxiety about "losing bowel control" in a public place so on a bad day I don't leave the house. The prospect of malnutrition/vitamin/mineral deficiency is real and scary.

I put in a new prescription a few days ago and the pharmacist told me he is not able to get Creon or Nutrizyme but he could get Pancrex V powder. I've asked my GP for a prescription for this. It doesn't sound nice - it has to be mixed with yogurt and eaten and obviously, because it contains digestive enzymes, can start digesting mouth tissues if its not all rinsed away well.

The Pancreatic Dietician who is on Facebook & Instagram has some good advice regarding the shortage.

Yes DH has received 2 pots of the 25000s when he should have had 6 for the last two months, and nothing at all for three weeks, so he’s been cutting out fat and cutting down the number he takes. He’ll run out completely within three weeks. The pancreatic society’s position statements are useful.

Pancrex V sounds really inconvenient. There are supposedly imports available from other countries but the pharmacy seems not to be able to get them, and seems to be expecting DH to ring around.

What I have been doing is getting a prescription a month in advance, which gives me time to try and source them, although I am only given one for 100 tablets a month (which generally do me). Whenever I am in another town, I try a chemist in the off chance. In one town I went into Boots (usually bad for supply) and was astonished to be told they had a small supply! For me it was a like finding gold dust in a river.

Rationing them (i.e. taking less than you really should) is not ideal at all, but what can you do? The problem is supposed to last until 2025...

I'm not confident that the situation will be resolved by 2025 - when all this started last year we were initially being told the shortage would last a few months but over time the date has been extended further into the future.

It's not only making life physically difficult & uncomfortable but it's also mentally stressful.

My GP couldn't understand why I had reduced the number of capsules I take (to try & make my supply last a bit longer) when it was having such an unpleasant effect & risks me suffering with what is basically malnutrition. But I've been totally without any capsules before for a couple of weeks and that was a complete nightmare compared to what I experience now.

That’s horrendous. No, I don’t think primary care understands this at all. And the issue will apparently continue until 2026, according to this CAS alert and its attachment. https://www.cas.mhra.gov.uk/ViewandAcknowledgment/ViewAlert.aspx?AlertID=103253

DH has lost 1kg in less than a fortnight and I still think he’s under-dosing.

Apparently there are unlicensed products available, if you can get your GP to prescribe them. I don't understand why "emergency licenses" can't be rushed through so these are more available.

There are, but community pharmacies seem not to have a way to get hold of them. Hospitals can though, so that’s a relief.

The imports are mainly Creon from other countries as far as I can tell, so it’s not an issue of licensing as such, but being packed in the “wrong” country’s packaging. I expect this is partly a Brexit benefit. Hopefully the DHSC will be able to put pressure on the manufacturer to sort it out more quickly.

No idea about your medication but when the Ranitidine ban started, I found an American pharmacist on eBay and I bought three years worth of them and they were even cheaper than they had been on sale in the U.K. even with the postage!

I don't need the Ranitidine now but at the time it was a lifesaver.

Have a look at American pharmacies to see if they will ship to the U.K. as they tend to be better stocked.

I prefer my sources of medicines to be legal with minimal risk of counterfeits, but attempting to get a prescription from a bricks and mortar pharmacy when we’re in the USA soon (assuming we can get enough Creon to last the trip) has crossed my mind. The cost would be extraordinary though.

Hi, Am experiencing the same issues unfortunately 😔 I have also got pancreatic insufficiency and was prescribed creon but I found the tablets far too big for me especially when I have a phobia with big tablets! And knowing I need to take these permanently it would stress me out. I’ve finally bin given a prescription for pancrex v powder which sounds so much better for me but can’t get it anywhere at all.

Hi, I’ve been prescribed this and you can mix it with milk or water. I think they mean it can irritate the mouth if it’s left in the mouth and you take it dry.