UPDATE: Pancreatic Enzyme Replacement Therapy (PERT) supply problems

Whilst PERT supply issues continue, please do not stockpile them. Stockpiling will further drive the shortage. 

The Department of Health and Social Care has recommended that only 1-month supply is issued at a time. This is to try and regulate supplies. So, if you currently receive 2-3 months of your PERT at a time, you will need to collect your prescriptions more often. If you pay for your prescription, consider applying for a pre-payment certificate here. This will help to reduce the cost of prescription charges.

You should place your prescription requests earlier. Do so 2 weeks in advance. This is to give the local pharmacist time to source your medication. 

If what you usually take is not available, you may need a change in your repeat prescriptions to another brand. Three brands of PERT are available in the UK. They are Creon®, Nutrizym®, and Pancrex®. 

Remember to store your PERT appropriately. All PERT should be stored below 25 degrees. Some brands recommend refrigeration, check the packaging. If PERT gets too hot it does not work properly, this damage cannot be reversed. 

Taking the PERT throughout the meal is the best way. Rather than all at the start/ middle/ end of the meal. This is because it improves how well it digests what you are eating. 

Ensure that you use your PERT before it goes out of date. If you store PERT in different places (i.e. at work), rotate your supplies to prevent waste. 

Table 1 shows how each enzyme product compares to others:

It may be most practical to combine medications. For instance, if the prescription is Creon® 25,000 x 3 with meals and 2 with snacks. These are all equal doses, using the different products: 

Creon® 25,000 x 3 with meals + Creon® 10,000 x 5, with snacks. 

or 

Creon® 10,000 x 8 with meals + Creon® 10,000 x 5, with snacks. 

or 

Creon® 10,000 x 8 with meals, + Pancrex® 340mg x 6, with snacks. 

or 

Nutrizym® 22 x 3 with meals, + Pancrex® 340mg x 6, with snacks. 

or 

Pancrex® 340mg x 10 with a meal, + Pancrex® 125mg x 16, with a snack. 

The first steps if supplies are limited, meaning you have some PERT but less than your usual amount: 

• Ask your doctor about taking a proton pump inhibitor (omeprazole® / pantoprazole®/ lansoprazole®) or an (H2)-receptor antagonist (Famotidine® / Nizatidine®). These reduce the acid in your stomach and make the PERT work better. This means a lower dose of PERT may work if you have a proton pump inhibitor. If this does not appear to be effective, they may be stopped. 
• Reduce the dose of PERT you take with snacks before reducing your doses with meals. This is because meals tend to be more nutritious.
• Take one less PERT capsule with each meal and snack. Don’t skip whole meal doses. 
• If you have some high-dose PERT (eg Creon 25,000/ Nutrizym 22), take it with you when you go out. Use the low-dose ones at home. This will cut the number of capsules you need to take out. 
• Prioritise taking PERT with the meals that have the most protein and energy in them. 

If you do not take vitamins and minerals, it is recommended that you take a calcium and vitamin D supplement. Check the label. It should have 800 iu Vitamin D and at least 500mg Calcium. Also, take a multi-vitamin and mineral supplement during this time. For example: 

• Sanatogen A-Z Complete® 
• Centrum Advance® 
• Supermarket own A-Z brand.  

Please make sure these contain both vitamins and minerals.  

People with CF should keep taking their vitamins and minerals. They should discuss any concerns with their CF specialist dietitian. 

Please contact your dietitian, nurse, or doctor if you struggle with malabsorption or keep losing weight. 

If you have diabetes: 

Check your blood glucose levels regularly. They should be checked: 

• Before meals 
• Before bed 
• If you are feeling unwell 
• If you feel like you are having a hypo*  
• If you are more active than usual 
• Before driving and every 1-2 hours if driving long distances.  

If you take less enzymes with your food, you are likely to absorb less carbohydrate from it. Therefore, you may need to reduce the amount of quick-acting or mixed insulin you inject to prevent a hypo*. 

*A hypo is when your blood glucose level goes below 4mmol/l, typical symptoms include sweating, shaking, blurred vision, confusion, palpitations. Always keep hypo treatment on you. 

You can find more information on recognising and treating a hypo from your diabetes team or here. If you would like a printed copy of this information e-mail: info@gutscharity.org.uk or call us: 020 7486 0341. You are only at risk of a hypo if you take medication that lower your blood glucose levels. It is not usually possible to have a hypo if you are not taking insulin or gliclazide. 

If you have a continuous glucose monitor, ensure you have the hypoglycaemic alarm set. If you are having more hypos than usual, you may need to contact your diabetes team for advice on adjusting your insulin doses. 

This section is for people who do not have enough PERT and develop symptoms, such as diarrhoea, severe bloating, or a sudden need to have a bowel movement. Check the list of symptoms on this page, above. Here are some other steps to try in addition to those above: 

• If you have diarrhoea, take loperamide / Imodium® before you eat a meal. This should help to slow down your gut and reduce diarrhoea. The longer food is within your gut, the more chance more of it will be absorbed by your body.  
• Reduce the amount of fat in your meal to ½ of your normal portion size of higher-fat foods. See Table 3 for information on higher-fat foods. This will likely improve some of your gut symptoms. But, it won’t help you take in more nutrients. It also won’t prevent malnutrition. So, keep a close eye on your weight and strength. 
• If you eat a lot of high-fibre foods, consider eating less of them. Very high-fibre foods can bind to enzymes in PERT and make them less effective (see Table 4 for information on higher-fibre foods). Healthy eating guidelines recommend adults try to eat 30g of fibre per day. We recommend with less PERT you do not exceed 40g per day. 

• If you do not have diabetes, use sugary foods and drinks to increase your energy intake. Table sugar is absorbed in your gut without enzymes. So, the following can keep your energy up: 
• Caffeine-free energy drinks such as Lucozade.  
• Adding sugar/honey/syrup to food. 
• Nibbling on sugary sweets/marshmallows (not chocolate).  
• These suggestions do not provide any other nutrition. So, make sure you get protein, vitamins, and minerals from other sources. 

If any one or more of these circumstances occur: 

• You are unable to get hold of any PERT at all. 
• You do not have enough PERT and are losing weight. If you are losing more than 2kg (4lb) a month. Or you are already underweight and losing more than 1kg (2lb) a month. 
• You don’t have enough PERT. Plus, you have bowel symptoms that are unmanageable and restrict your social, work, and education activities. 

If you are under the care of a hospital team, contact them. See if they have enough supplies to issue a prescription for you. You will have to travel to the hospital to collect these if they have some available. 

Tell your pharmacist that you have completely run out. This is so your supplies can be prioritised if possible. 

Try not to worry. Supplies are regularly coming into the country, so this should be a short-term issue. 

Contact your GP. Ask for a prescription for a peptide nutritional drink. (Vital 1.5kcal® or Peptisip Energy HP®). Show them this leaflet. Or show them the position statement. Both could help. If you are known to a dietitian, they can be contacted too. But, because of the huge increase in workload from this PERT shortage, you are likely to get them more quickly if you go directly to your GP. These drinks can be used instead of meals until you have your PERT again. If you do not have diabetes, you can keep having sugary foods and drinks. Table 2 shows how many supplement drinks you should take if you do not have any PERT at all. 

Table 2 shows the recommended doses for peptide-based nutritional supplement drinks if you are unable to eat any food due to your malabsorption symptoms. 

This may underestimate your needs. If you lose weight or are very active, add one more bottle per day. If you gain weight and were not intending to – reduce by 1 bottle per day. 

They do not come in many flavours. But you can add milkshake mixes or coffee syrups to expand the flavours. Serve them chilled. Or freeze them into ice lolly moulds or ice cube trays for more variety. 

Table 3 shows high fat foods and their lower fat alternatives. 

 Table 4 shows the fibre content of high fibre foods. Aim for less than 40g fibre per day.