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Sharing your experiences of PERT
Since late 2023, the Trust has been monitoring issues with PERT supplies across the UK when the CF community and clinicians began to experience difficulties sourcing the vital medicine.
We know from the survey we did last year (2024) that this has caused significant worry and stress for those affected. We’ve heard from those who have sometimes needed to travel to multiple pharmacies and make changes to their diet and nutrition as a result of shortages. We’ve used these experiences to keep pressure on the Government and manufacturers to address and reduce the impact of Creon shortages.
Although Creon is still regularly coming into the UK, the supply issues may unfortunately continue for a while. We’re now running a new survey to find out whether the steps taken by the Government, NHS, and manufacturers are making a difference.
We are here for everyone affected by cystic fibrosis.
Please contact our Helpline for more information and click here for the latest information and FAQs.
Speak to your CF team if you have any concerns. You can also call the free Viatris customer support line for information about which pharmacies have recently received a supply of Creon in your area on 0800 808 6410.
While we know some people are now finding it easier to access Creon, we spoke to Adam and Isabelle about how the shortages are still affecting them.
Adam said: I’ve had to skip meals completely, not because I’m not hungry, but because I simply didn’t have enough Creon to cover three meals a day. You start rationing food, not for dieting reasons, but for survival. And the impact of that mentally is huge. Food becomes a source of anxiety instead of comfort or joy. I’ve had to change my whole diet just to deal with this shortage. You feel isolated when everyone else is eating freely and you’re quietly starving yourself, just to stretch your tablets.
It doesn’t just mean discomfort; it means bloating, stomach cramps, wind, running to the toilet multiple times a day, and constant nausea. I’ve had days where my belly was so bloated I looked six months pregnant. I always wake with belly pain that lasts a few hours. I reach lunchtime and then the pain starts again in the afternoon. It’s a never ending circle. I’ve had to sit through work meetings, pretending to be fine, while my stomach churned in pain.
It’s not just physical; it affects your mood, your concentration, and relationships. When you're constantly hungry, tired, and in pain, it chips away at you. And for people with cystic fibrosis, that adds to an already heavy emotional load. This shortage isn’t just an inconvenience; it’s affecting lives. We already battle every day to manage this condition and stay well. We shouldn’t have to fight for basic, essential medication that keeps our bodies going.
Isabelle said: It’s been a nightmare. I’m usually on 6-8 pots of Creon 10,000 a month. My pharmacy have said they can only give me one pot, and if I want more, I need a new prescription. But my GP doesn’t know I’m only getting one pot, so there’s nothing I can do. I added one pot of 25k to my prescription as a safety net and now they are struggling to get that. I go to the pharmacy every single week to see if they have more. At one point I was driving around trying to find stock but it was a pointless task and taking up a lot of my time. Stock trackers weren’t working, and most pharmacies are only open 9-5 so I would have to do it in working hours, but I wasn’t getting anywhere.
Bowel blockages are something I’ve always struggled with, but they are becoming more frequent. I worry about the damage this could be doing to my bowel as I know people with CF are at higher risk of developing issues.
It’s very unnerving, I’ve had Creon all my life. To have that taken away is tough. I’m having to work from home and am away from my desk more than I would like to be. I’m anxious all the time, and I feel like having to ration Creon is holding me back, and my life is on hold.