Creon supply update

Gillian taking Creon

Creon supply update

Cystic Fibrosis Trust, and CF clinicians, dietitians and pharmacists are working hard to ensure that the impact of shortages of Creon on the health and wellbeing of people with CF is minimised. 

Some people with CF have been experiencing interruptions in the supply of Creon. Find out more about the situation and what we're doing to help.

Last updated 29 October 2024 

We’ve been monitoring issues with Creon supplies across the UK since late 2023, when some people with CF, their families and CF clinicians began experiencing medium-term interruptions in supply. This has caused significant worry and stress for those affected who have sometimes needed to travel to multiple pharmacies to find Creon, a vital medicine for many people with CF. We’ve been really concerned to hear that in some cases, people have been forced to make changes to their diet and nutrition as a result of shortages. 

Although Creon is still regularly coming into the UK, the supply issues may unfortunately continue for a while. We're working with everyone involved to highlight how important Creon is and to try to reduce the impact of these issues on people with CF. 

  • If you’re unable to get hold of Creon via your pharmacy, you should speak to your CF team before you run out, they may be able to order Creon directly from the distributor. 
  • You can 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.
  • We can support you with arranging adjustments at work or in education, with increased costs due to travel or missing work, and by providing the most up to date information about the Creon situation. Contact our Helpline for more information on the support we provide. 

We've put together some FAQs to provide the latest information about Creon availability, and what to do if you are experiencing difficulties in accessing Creon. 

15 May 2024 - video update from Dr Keith Brownlee

Hear from Dr Keith Brownlee, Director of Medical Affairs at the Trust, about the situation with Creon supplies across the UK.

Skip through to the information you need:

  • 00:14 Why do some people with CF need to take Creon?
  • 00:42 What is the problem with the supply of Creon?
  • 01:34 What's being done to solve the problem?
  • 01:51 What should I do if I can't get Creon?

Guidance for people with CF

Cystic Fibrosis Trust, and CF clinicians, dietitians and pharmacists are working hard to ensure that the impact of shortages of Creon on the health and wellbeing of people with CF is minimised. 

We worked with Kerry and Liz, who are CF dietitians, and Kevin, who is a doctor and chair of the UK Cystic Fibrosis Medical Association (UKCFMA), to answer your questions.

  • What should I be doing?

    If you have been prescribed Creon, it is important that you always take this medicine as instructed by your CF team.

    Try your pharmacy and local pharmacies first. If you are not able to access supplies of Creon from your local pharmacy, you should talk to your CF team and they will arrange supplies for you through the hospital.

    Managing your Creon prescription
    • The Department of Health and Social Care has recommended that only a one-month supply is issued at a time to try to regulate supplies. So if you currently receive two to three months of Creon at a time, you will need to collect your prescriptions more often. If you pay for your prescriptions, consider applying for a prescription prepayment certificate (PPC) to reduce the cost of prescription charges.
    • We suggest you place your prescription requests two weeks earlier than usual to give the community pharmacist time to source your medication. This may mean putting in the next prescription as soon as you get the last one.
    • Talk to your pharmacist or pharmacy manager so they are aware you are having problems getting Creon. They should be able to help you, and if they have capacity, some may be able to check in with other pharmacies for you.
    • You may need a change in your repeat prescriptions if what you usually have is not available.
    • Request your prescription for Creon separately from other medications. Having separate prescriptions means you can more easily try alternative pharmacies.
    Storing and using your Creon
    • Remember to store your Creon in a cool place. If capsules get too warm (more than 25°C), they will become less effective because the enzymes will break down.
    • Make sure that you 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 team if you are running low.
    • Please do not stockpile Creon as this will make the situation worse, and it will take longer to increase supplies. Creon should be used within its date label, as it becomes less effective over time. Stockpiling will make the shortages worse as distributors will struggle to keep up with an increase in demand. 

    It is a worrying situation, but please work with your CF team and pharmacists. Supplies will come through, if a little slower than usual.

  • Should I be making changes to my diet?

    There are some dietary changes that you can consider, but it would be on an individual basis, and would require 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.

  • If I’m low on Creon, can I use over-the-counter or unlicensed medicines, such as papaya extract?

    No, we do not recommend this.

    Not all digestive enzyme products are licensed. This means you cannot be certain they are safe and effective. Those found in health food stores, for example enzymes made from papaya extract, do not contain the right types of enzymes or enough of them to be useful. 

    It is also important to note that there are no safe and effective or licensed vegetarian or vegan products available. If you have any queries about alternative enzymes, please discuss this with your CF team.

  • Can I try alternatives to Creon?

    Addressing pancreatic insufficiency is essential for many people with CF to stay well and you will have been prescribed a product (most commonly Creon 10,000 or Creon 25,000) to achieve this. Do not use alternative products, including those you might see on the internet, without discussing this with your CF team. The safety and reliability of these products cannot be guaranteed.

  • I’m low on enzymes and experiencing gastrointestinal (GI) symptoms – what should I do?

    Without your enzymes you might experience symptoms such as bloating, diarrhoea or constipation.

    • Ensure that you are taking enzymes with all meals. Don’t miss enzymes with some meals to ensure you have enough for a larger meal. You also need to take enzymes with any snacks you are having.
    • You may consider reducing your dose by one enzyme with a snack or smaller or lower-fat meal.
    • 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. 
    • Your dietitian may advise you to use a mix of different strength enzymes due to the current shortages.
    • 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.
  • I’ve seen some information online for other conditions — should I be following this?

    No – these other conditions may have different requirements to you and therefore it is best to speak to your CF team for advice that meets your needs.

  • Where can I get help?

    Viatris customer support line

    The company that distributes Creon in the UK has set up a dedicated phone line to provide support to patients and healthcare professionals in the UK. This service will provide the most up-to-date information about the supply of Creon. It will also have information about which pharmacies have recently received supply of Creon in your area. 

    The free customer support line is open Monday to Friday, from 09:00 to 17:00 and can be contacted on 0800 808 6410.

    Sourcing Creon

    Continue to work closely with your community pharmacist, but if they are unable to source Creon products, then contact your CF team. They will arrange alternative supplies, probably from the hospital.

    Financial support

    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 our Helpline.

    Emotional and mental health support

    We know the Creon shortage is having a big impact on people with CF and their families. Everyone will respond differently to the shortage but we have heard from lots of people who are feeling stressed, anxious, frustrated, angry and overwhelmed. All of these are normal and reasonable responses to an essential treatment being affected by a supply issue.

    The stress people are experiencing is being caused by a practical problem, the supply chain issues, so fixing this (something the Trust is working hard on) is the key to reducing stress and anxiety. This will take time so it’s useful to have strategies you can use while this happens. 

    Some of the ways you already cope with stress or that could help you deal with stress may include:

    • Asking for help from family and friends. There will be lots of things to do with managing your CF that other people can’t do for you but at times of increased stress if you have people you can ask to help you think about what they might be able to do e.g. calling pharmacies or helping with non-CF chores to help take some of the pressure off when time is tight, or we have too many things to do.
    • Talking to friends, family and professionals about the stress that we are experiencing. Sometimes just sharing what we’re going through can really help lift some of the unease we are experiencing.
    • You may find things such as mindfulness techniques, meditation, walking, yoga or exercise help you, if so, be sure to make time for these activities. If you do not find them useful that’s okay too, there may be other methods you find more suited to you. At times of stress it can be difficult to prioritise self-care but try to make time for these things.
    • Acknowledging what you can do and what you can’t change. There are many things you can do in this moment by following the advice on this page, and by doing everything you are already doing to care for your CF. However, there will be a lot that is out of your control and while it’s very difficult, accepting that can help to ease some of the pressure we put on ourselves.
    • This video about dealing with stress and uncertainty may be helpful. 
  • What support is available to help manage day-to-day activities?

    Pancreatic enzyme replacement therapy (PERT) such as Creon is a vital medication in CF.  If you are struggling to get hold of your usual supply, you may be experiencing difficult symptoms which affect your daily life. While we work with everyone involved to try to get the supply issues resolved as quickly as possible, the information below might help if you’re facing practical challenges. 

    Work 

    Cystic fibrosis is classed as a disability, which means that people with CF have a right to request reasonable adjustments at work. You may want to ask your employer for a change in your usual work environment or working pattern to support you if you are dealing with:

    • difficult digestive symptoms
    • spending time travelling to pharmacies
    • your concentration and energy at work being affected.

    For example, you could request an adjustment to do more work from home, or spend more time away from a frontline customer service environment so you can get to the toilet more quickly and easily. If you need any support to have these conversations with your employer, get in touch with your CF social worker or another member of your CF team.

    You can also get in touch with our Work Forwards team, who can provide support.

    We also have information to explain cystic fibrosis to employers

    Travel costs 

    Many of you have told us you are facing extra costs to travel to pharmacies, especially if you need to travel to your CF centre to get your PERT. If these extra costs mean you are struggling to afford the basics you need for your health, or if you are on a low income and unable to afford to travel to collect  PERT, you may be able to apply for an emergency grant. 

    School 

    Our class passes may be useful for children and young people at school as they provide a discreet way for pupils to communicate to their teachers that they need to go to the toilet. Children and young people should have an individual healthcare plan at school which sets out the support they need – you can ask to review this plan and make sure it covers any extra support your child needs at the moment. 

    Primary school individual healthcare plan Secondary school individual healthcare plan

    Exams 

    Some people at school, college or university will be dealing with exams while there are Creon shortages. If you have any concerns about changes in diet or medication affecting exam performance, speak to your school, college or university as soon as possible and discuss any adjustments that might be needed, such as more toilet breaks or extra time.

    Access to disabled toilets 

    Access to disabled toilets may be helpful. You can look into getting a RADAR key, which will give you access more disabled toilet facilities.

    Some people find wearing a sunflower lanyard gives them confidence that others will understand that they have an invisible health condition and have the right to use a disabled toilet. 

Information about the Creon supply situation

We know people with CF are understandably worried about this situation. We're working hard alongside other charities to make sure everything possible is being done to address the supply issues.

  • What is Creon?

    Most people with CF in the UK need some kind of pancreatic enzyme replacement therapy (PERT). This is essential to help control symptoms such as bloating and diarrhea and to absorb fats, oils, fat soluble vitamins and certain medications such as Kaftrio. The most common PERT is Creon®, but other PERTs include Nutrizym and Pancrex. 

  • What’s causing the supply issues?

    The production of Creon relies heavily on pancreatic enzymes sourced from pigs. Viatris, the distributor of Creon, has told us that a shortage of these raw ingredients is straining the manufacturing process and disrupting global supply chains. A global push for leaner pigs has resulted in fewer available enzymes, making it harder to meet demand and requiring increased manufacturing capacity. Viatris is working with its manufacturing partner to boost Creon production, but this is not expected to have an impact until 2026. There are still regular shipments of Creon coming into the UK, but as the amount coming in is less than what is needed, this presents challenges for ensuring that Creon is distributed to the parts of the UK where shortages are most acute. 

  • What is the current situation and how long might the supply issues last?

    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 and manufacturing issues. This is more of a problem with Creon 10,000 than Creon 25,000 at the moment, but this may change in the future, and Creon 25,000 might become harder to get. Micro Pancreatin 60.12mg (granules) are also now in limited supply. We are told this shortage of granules is currently expected to be until late September 2024.

    The Department of Health and Social Care issued a Medicine Supply Notification (MSN). An MSN is the official way that Department of Health communicates about medicine shortages. This means all pharmacists should know about this problem and manage their stocks of Creon appropriately.

    The Department of Health recognises in the Medicines Supply Notification that people with cystic fibrosis should be prioritised for Creon access. 

    They have advised that people taking Creon should be prescribed a maximum of one months’ supply. This will help to ensure there’s enough to go around. Children and people who have difficulty swallowing will be prioritised for Creon 10,000 if they are unable to take Creon 25,000. People who cannot tolerate Creon will be the priority to be given Nutrizym 22. Babies and children who usually take Creon Micro granules may be given Creon 10,000 instead, and will be given instructions on how to use this by their CF team. Please discuss any changes to your prescription or any queries with your CF team.

    The notification also summarises the timelines for the shortages:  

    • Creon® 10,000 and 25,000 gastro-resistant capsules continue to be delivered but will be in limited supply until 2026. 
    • Nutrizym® 22 capsules are in limited supply.
    • Pancrex V® capsules and powder remain available but are unable to support an increase in demand. 
    • Creon® Micro Pancreatin 60.12mg (granules) are currently in limited supply. 

    Although it is expected that supply issues may continue for some time, the Trust and other stakeholders are working hard to ensure the impact on the health and wellbeing of people with CF is minimised during this period. 

  • What is being done?

    The Department of Health is aware of the situation and their medicines supply team has issued an alert. This has raised the profile of the problem both with local pharmacies and nationally.

    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, the company that distributes Creon in the UK, and to 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. We have also written to the Secretary of State for Health, alongside other charities, to highlight our concerns.

    We have also been working closely with clinical experts to better understand the supply issues and how to address them. In April 2024, we asked all CF centres about Creon supply issues in their area. Their responses showed a mixed picture with some centres highlighting significant short-term supply issues, and others experiencing no issues. They also highlighted differences in which parts of the UK were experiencing interrupted supplies. Some areas had problems earlier in the year but none since, others were experiencing difficulty accessing supply now, and others had no interruption to their supply.

    We continue to work with CF professionals to highlight why a stable Creon supply is so important to people with CF, and to make sure that guidance is in place to support prescribers when there is low supply.   

    Read more about what we've been doing to address the Creon shortages

  • Is Brexit to blame?

    Even though Brexit has affected the availability of some medicines, it is not likely that it is causing the recent shortages of Creon. 

    People with CF across Europe are also struggling to access Creon and other types of PERT, with many countries experiencing regional variations in supply as in the UK.

  • What is the situation internationally?

    There have been Creon supply issues in other countries in Europe, and like in the UK, the supply levels vary between regions. The organisation CF Europe reported that several European countries were having problems with their Creon supply during 2023. 94% of people surveyed from Belgium reported difficulty in accessing Creon at some point in 2023. We have also discussed Creon/PERT shortages with similar organisations in other countries, including the Republic of Ireland. More work is planned to fully map the issue at the European, regional and national levels. Cystic Fibrosis Trust will continue to engage with CF Europe to make sure the experience of people with CF in the UK is included.

  • What can I do to help?

    Write to your MP

    It's important to ensure that politicians in Westminster are aware of interruptions to supply in medicines and your experiences. The more they are aware of the challenges their constituents face, the more they will raise awareness of this in Parliament. 

    Find out who your MP is and contact them [parliament.uk]

    Make sure you copy us in, using the email address [email protected].

    We've put together a template letter you can use to get started with writing to your MP. Your MP will be more likely to respond to a personal letter, so make sure to include some information about why you need to take enzymes, and how the Creon shortages have impacted your life.

    Download our template letter to MPs

If you need more information or support regarding the current issue with PERTs, or any aspect of cystic fibrosis, please contact our Helpline. Lines are open Monday–Friday, 10am–4pm. 

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