As the Creon supply issues continue, we spoke to clinicians about what you can do to minimise the impact
The supply of Creon (and other brands of pancreatic enzyme replacement therapy (PERT)) has been affected by a global shortage, caused by a lack of the raw ingredients needed and manufacturing issues.
We know that the inconvenience, increased costs, and worry surrounding this situation are really difficult for the CF community. If you need support, please speak to your CF team or contact the Trust’s Helpline.
Learn more about the Creon supply situation
What should people with CF who take Creon do?
Managing your prescription
- You might need to collect your prescription more often. Apply for a prescription prepayment certificate (PPC) to reduce the cost of prescription charges.
- Place your prescription requests two weeks earlier than usual to give the community pharmacist time to source your medication.
- Talk to your pharmacist or pharmacy manager so they are aware you are having problems getting Creon.
- If your community pharmacist can’t source Creon products, then contact your CF team. They will arrange alternative supplies, probably from the hospital.
Storing and using your Creon
- Store your Creon in a cool place (under 25°C) to make sure it stays effective.
- Use your Creon before it goes out of date.
- If you store Creon pots in different places (for example, at work), make sure you rotate your supplies to prevent any wastage.
- Do not leave it until you run out – contact your CF team if you are running low.
- Please don’t stockpile Creon, as this will make the situation worse and it will take longer to increase supplies.
Changes you could make
- You might be able to make some dietary changes with the support of your CF dietitian. If you feel you would like to explore this, please contact your CF dietetic team to talk about it.
- Don’t use over-the-counter or unlicensed medicines, because you can’t be sure they are safe and effective. Those found in health food stores, such as enzymes made from papaya extract, do not contain the right types of enzymes or enough of them to be useful.
- You may consider reducing your dose by one enzyme with a snack or smaller or lower-fat meal.
- Your dietitian may advise you to use a mix of different strength enzymes due to the current shortages.
- You can also contact your CF dietitian to discuss other possible changes. This is to make sure you are changing your doses to suit how much and the types of foods you eat.
What to do if you’re experiencing gastrointestinal (GI) symptoms, such as bloating, diarrhoea or constipation
- Take enzymes with all your meals, including snacks. Don’t miss enzymes with some meals to ensure you have enough for a larger meal.
- Make the most of the enzyme dose you are taking with your meals. You can do this by spreading the enzymes throughout the meal; for example, take them at the beginning, middle and end of the meal. This will best help you digest and absorb the food.
- If you continue to have GI symptoms, please contact your CF team.
What to do if you’re struggling
- We appreciate the inconvenience and the potential for extra costs. If you're on a low income and can't afford to travel to a main hospital to pick up a prescription, please contact the Trust’s Helpline.
- These supply problems are having a significant impact on people with CF and their families. It is stressful when an essential treatment is being affected by supply issues. It’s normal to feel anxious, frustrated, tired, demotivated, upset or stressed about this. Don’t hesitate to discuss these feelings with your CF team and clinical psychologist.
It is a worrying situation, but please work with your CF team and pharmacists. Supplies will come through, if a little slower than usual.
Find more information about the supply issue and what you can do
What is being done to address the situation?
This is a serious problem for people with CF who are pancreatic insufficient and require enzymes. It is essential they have access to these products. The Trust are working tirelessly with all relevant parties to address the problem and highlight the essential need for people with CF.
The Department of Health and Social Care has issued a Medicine Supply Notification (MSN). This means that all pharmacists should know about this problem and manage their stocks of Creon appropriately.
The company that imports Creon products into the UK, Viatris, is exploring alternative supplies and plans are being made to increase production. As we move into next year, it is hoped that the situation will improve, but we appreciate this is a long period of disruption for people with CF and their families.
The Trust has been speaking regularly to Viatris and the NHS to ensure that everything is being done to address these supply issues and to ask for better and more regular communications with the CF community. They have also written to the Secretary of State for Health, alongside other charities, to highlight these concerns.
Read more about the work the Trust has been doing in response the Creon shortages
We understand that this is a very challenging time for the CF community. Your CF team is always there if you need support, and you should speak with them before making any changes to your enzymes or diet. Do not make any changes to your medicines regimen without first speaking to your CF team.
We’ve worked with CF professionals to put together guidance for anyone with CF who is affected by the issue. Find out more about the supply issue here.
If you need more information or support with this, or any aspect of cystic fibrosis, please contact our Helpline (lines are open Monday–Friday, 10am–4pm).
Thank you to Liz, Kerry and Kevin for providing up-to-date information on the Creon shortages.