How to deal with Creon, Nutrizym or Pancrex supply issues

While you can still get your PERT, we know that you might feel worried about these supply issues. Please do not stockpile by getting extra supplies. This will cause further shortages.

It is a good idea to put in your prescription requests 2 weeks earlier than usual to give the pharmacist time to get your PERT. Please do not ask for extra prescriptions, as this will make the shortages worse.

You may need to change your repeat prescriptions to a different brand if the PERT you usually take is not available. Speak to your GP about this. There are three brands of PERT available in the UK: Creon^®, Nutrizym^® and Pancrex^®.

You may need to make up your usual dose using different types of PERT.

For example, if you normally take three Creon 25,000 capsules with meals and two with snacks, you can make up this dose using different products:

• three Creon 25,000 capsules with meals and five Creon 10,000 capsules with snacks, or
• eight Creon 10,000 with meals and five Creon 10,000 with snacks, or
• three Nutrizym with meals and two with snacks, or
• eight Creon 10,000 with meals, and six Pancrex 340mg with snacks, or
• three Nutrizym 22 with meals, and six Pancrex 340mg with snacks, or
• ten Pancrex 340mg with a meal, and 16 Pancrex 125mg with a snack.

Speak to your dietitian if you have one a, GP or pharmacist for more advice about this. You can also speak to our specialist nurses on our Support Line. They can talk through the doses you will need.

Tips to help you get the best from your PERT

• It is best to spread your PERT out during the meal, rather than all at the start, middle or end of the meal. This improves how well the PERT digests your food.
• Remember to store your PERT properly. All PERT should be stored below 25^oC, and some brands recommend keeping it in the fridge.
• Make sure you use your PERT before its expiry date.

This information may help you manage your digestion if the supply of PERT is limited. You may be able to get some PERT but less than you usually do.

Taking a medicine called a proton pump inhibitor or an (H2)-receptor antagonist reduces the acid in your stomach. This can help make the enzymes work better.

• Proton pump inhibitors include omeprazole, pantoprazole, and lansoprazole.
• Brands of (H2)-receptor antagonists include Famotidine^® and Nizatidine^®.
• Speak to your doctor or nurse about whether these medicines would be helpful.

If you can’t get enough PERT for your normal dose, you will need to reduce how much PERT you take. These suggestions may help.

• Try reducing the amount of PERT you take with snacks, before reducing the dose with meals. This is because meals tend to be more nutritious.
• Reduce the dose of PERT by one capsule with each meal and snack. This is better than not taking any PERT with a meal.
• Try to make sure your meals have plenty of protein and energy in them.

If you are not already taking vitamin and mineral supplements, these can help you get these nutrients. You can take a calcium and vitamin D supplement containing 800iu Vitamin D and at least 500mg Calcium. Multi-vitamin and mineral supplements include Sanatogen^® A-Z Complete, Centrum Advance^® or a Supermarket own brand A-Z multivitamins. Make sure that these contain both vitamins and minerals.

Speak to your dietitian, specialist nurse or GP for support with reducing how much PERT you take. It is important you speak to them if you have any of the symptoms of digestion problems, or are losing weight. You can also speak to our specialist nurses on our Support Line for help with this.

If you have some high dose PERT left, you may find it helpful to take this with you when you go out. Use the low dose capsules when you are at home. This will reduce the number of capsules you need to take out with you.

If you have diabetes

If you have diabetes and need to reduce how much PERT you take, you may find it harder to manage your blood glucose levels.

Monitor your blood glucose levels regularly, including:

• before meals
• before bed
• if you feel unwell
• if you feel like you are having a hypo (when your blood glucose level drops below 4mmol/l)
• if you are more active than usual
• before driving and every 2 hours during the journey.

Hypoglycaemia (a hypo)

If you take less PERT, you are likely to absorb less carbohydrate from your food. This means you may need to reduce the amount of quick acting or mixed insulin you inject to prevent a hypo. Make sure you know how to recognise and treat a hypo.

You are only at risk of a hypo if you take medicine such as insulin that lowers your blood glucose levels. It is not usually possible to have a hypo if you have diabetes treated with metformin or DPP-4 inhibitors (Gliptins), or if you manage your diabetes through diet.

If you have a continuous glucose monitor, make sure you have the hypoglycaemic alarm set.

Speak to your diabetes team about managing your diabetes if you are taking less PERT. If you are having more hypos than usual, contact your diabetes team for advice on changing your insulin doses.

You can contact our specialist nurses on our Support Line for more support with managing your diabetes.

If you take oral nutritional supplements

Nutritional supplement brands include Fortisip^®, Amyes^®, Ensure^®, and Fresubin^®, Altraplen^®, and Foodlink^®. If you take these, ask your dietitian if they can be changed to a peptide nutritional supplement. These include Vital 1.5kcal^® and Peptisip Energy HP^®. Many people find they can take these with less or no PERT.

These do not come in a wide range of flavours, but you can add milkshake mixes or coffee syrups for more flavours. To give you more options, you could have them chilled, or freeze them into ice lolly moulds or ice cube trays.

Sometimes you may be offered a fat-free nutritional supplement, such as Actagain Juce^®, Altrajuce^®, Fortijuce^®, Ensure Plus Juice^® or Fresubin Jucy^®. These usually need less PERT to be digested. Sip these slowly to give your gut more time to digest them without PERT. If you have diabetes, monitor your blood glucose levels closely when taking these.

Try not to worry if you feel bloated taking these supplements. This is a normal effect of taking these without PERT. But speak to your dietitian if you find the bloating hard to deal with, or if it is affecting your quality of life.

If you cannot get enough PERT and you get symptoms such as diarrhoea, severe bloating, or needing to poo urgently, speak to your dietitian, nurse or GP. Remember that you can also speak to our specialist nurses.

You could also try these steps to see if they help.

• If you are struggling with diarrhoea, consider taking some loperamide such as Immodium^® before your main meal. This should help to slow down your gut and reduce diarrhoea. The longer food is in your gut, the more chance more of it will be absorbed by your body.
• You could try reducing the amount of fat in your meal to half your normal portion size of higher fat foods. Read about high fat foods. This is likely to improve some of your symptoms. But it will also mean that your meal contains less energy. So it’s really important you keep a close eye on your weight and strength.
• If you eat a lot of high fibre foods, consider eating less of these. Very high fibre foods can make enzymes less effective. Read about high fibre foods.
• If you do not have diabetes, have sugary foods and drinks to get more energy in your diet. Table sugar does not need PERT to be absorbed in your gut. You could try Lucozade, or adding sugar, honey or syrup to foods. This may help keep your energy levels up. You could also have sugary sweets or marshmallows, but not chocolate. Be aware that these do not provide any other nutrition, so make sure you also have food with protein, vitamins and minerals.
• If you are not already taking one, it is a good idea to take an A-Z multivitamin and mineral supplement. Take this with a meal that you are taking PERT with.

Reduce your portion sizes of high fat food, and have lower fat foods instead.

Fats and oils

• Reduce the amount of butter, lard, ghee, margarine and cooking oils.
• Instead, have small portions of low-fat spreads. You could use spray on cooking oils if needed.

Dairy products

Reduce how much full fat milk and yoghurt, cream, creme Fraiche and cheese you have.

Have these dairy products instead:

• semi-skimmed or skimmed milk
• low fat yoghurts
• use small amounts of grated cheese instead of slices of cheese – choose stronger cheeses to maximise taste.

To increase how much protein you have, add skimmed milk powder to skimmed milk. Use in place of milk throughout the day.

Meat and Fish

Reduce your portion sizes of:

• fried foods
• foods cooked in batter
• skin or visible fat on meat
• tinned fish that’s tinned in oil.

Instead, have meat and fish cooked without added oil. If you have tinned fish, make sure it’s tinned in spring water or brine.

Plant based protein

• Reduce how much nut butter you have.
• Instead, have pulses such as lentils, chickpeas and beans (see information about fibre for portion sizes).
• Have up to 100g of Quorn or Tofu.

Fruit and vegetables

Have as much fruit and vegetables as you like. But be aware of high fibre foods.

Carbohydrate based foods

• Reduce your portion size of croissants, pastries, chips, fried and roast potatoes.
• You can have bread, breakfast cereals, potatoes, rice or pasta, cooked without added fat.

Sauces and condiments

Reduce:

• cheese based sauces
• creamy sauces
• large portions of mayonnaise.

Instead have:

• tomato based sauces
• gravy mustard
• tomato ketchup
• soy sauce
• mint jelly
• vinegar
• low-fat salad dressings

Aim for less than 40g fibre per day

 Very high fibre food

These portion sizes provide 10g of fibre.

• All bran – 40g
• brown pasta – 250g (cooked)
• baked Beans – 300g
• dried apricots and prunes – 120g
• nuts and seeds – 150g
• dried lentils, chickpeas and mung beans – 100g (weight before cooking)
• dried soya beans and red kidney beans – 70g (weight before cooking)
• desiccated coconut – 70g.

High fibre food

These portion sizes provide 5g of fibre.

• 1 large whole wheat pitta
• 2 Weetabix biscuits
• 4 Rye based crackers (such as Ryvita)
• 2 Shredded wheat biscuits
• 30g bowl of Branflakes, Sultana Bran, Fruit n Fibre
• A large bowl (60g oats) of porridge or readybrek
• 1 medium jacket potato with skin
• 250g cooked white pasta
• 150g cooked wholemeal spaghetti
• 100g wholemeal bread
• 150g baked beans
• 75g Quorn
• 120g green beans, peas (fresh or frozen)
• 5 tablespoons spinach
• 7 tablespoons sweetcorn
• 1 whole avocado

This information explains what may help if:

• you can’t get hold of any PERT at all, or
• you are losing more than 2kg of weight a month, or you are already underweight and losing more than 1kg a month, or
• you have uncontrollable bowel symptoms that are restricting your daily life.

We know this is a very worrying situation. Supplies are being regularly restocked, so if you do run out, this should only be a short term situation for you. We are putting pressure on the manufacturers and the government to try to make sure people can still get their PERT. But we want to provide information in case anybody can’t get PERT. Remember that you can call our specialist nurses for support and information.

If you are under the care of a hospital team, contact them and see if they have enough supply to provide 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, so your supplies can be prioritised if possible.

Contact your GP and ask for a prescription for a peptide nutritional supplement. This might be Vital 1.5kcal^® or Peptisip Energy HP^®. You do not need to take PERT with this nutritional supplement. It might be helpful to show your GP this information. You can also contact your dietitian if you have one, but you may be seen more quickly if you go straight to your GP.

The peptide nutritional supplement can be used instead of meals until you have your PERT again. If you do not have diabetes, you can continue to have sugary foods and drinks as well.

How many peptide nutritional supplement drinks to have

This is a guide to how many supplements (Vital 1.5kcal^® or Peptisip Energy HP^®) to take, if you do not have PERT and cannot absorb your food. It is based on your weight.

• If you weigh below 40kg (6st 4lb), contact a dietitian.
• If you weigh 40 – 50kg (6st 4lb- 7st 12lb), take four 200ml bottles, which is 1200kcal (calories).
• If you weigh 50 – 60kg (7st 12lb – 9st 6lb), take five 200ml bottles (1500kcal).
• If you weigh 60-70kg (9st 6lb – 11st), take six 200ml bottles (1800kcal).
• If you weigh 70-80kg (11st – 12st 8lb), take seven 200ml bottles (2100kcal).
• If you weigh 80-90kg (12st 8lb – 14st 2lb), take eight 200ml bottles (2400kcal).
• If you weigh over 90kg (14st 2lb), contact a dietitian.

This may not be enough for you. If you lose weight or are very active, have one more bottle a day.

If you gain weight and were not intending too, have one less bottle a day.

These supplements do not come in a wide range of flavours. You can add milkshake mixes or coffee syrups for more flavours. Serve them chilled, or freeze them into ice lolly moulds or ice cube trays to give you more variety.

For people who have a gastric feeding tube

If you have a PEG, RIG or NG (nasogastric) feeding tube, you could take powdered PERT through this tube. Pancex V powder^® is the powdered PERT available in the UK. This can be dissolved in water and flushed down the tube, but this must be done when you eat.

This does not work with a jejunostomy or naso-jejunal tube as the enzymes will not mix with your food.

If you have a feeding tube, discuss this with your dietitian.