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. Pharmacists have been told to only provide one month’s supply at a time.

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, your 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. Or your pharmacist may be waiting for more PERT to be delivered so that they can give you your latest supply.

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. This means you may be able to take a lower dose of PERT and it will still work well.

• 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 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.

How to reduce your dose to make your supplies last longer

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.

First step

• 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.
• Try reducing the dose of PERT you have with snacks by one capsule.
• Spread your PERT out during your meal.

If this is not enough

• Reduce the dose of PERT by one capsule with each meal and snack. This is better than not taking any PERT with a meal.

If this is still not enough

• Reduce the dose of PERT by one capsule with each meal, and only have a small piece of fruit as a snack. You do not need to take PERT with the fruit.

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.

Example meal plan

This meal plan is an example of changes you could try making if you do not have enough PERT but are losing weight and do not have diabetes (see below). This can help you reduce the amount of PERT you take to 5 capsules a day.

We would not usually suggest you reduce the amount of fat you have. This information is only for when you do not have enough PERT and need to reduce how much you take.

Breakfast:

• bowl of cereal with skimmed milk
• low-fat yoghurt with honey
• orange juice
• cup of tea

Take one 25,000 dose of PERT. Switching to low fat milk and yoghurt should mean you can reduce the dose of PERT to 1 capsule. Low fat food should help to reduce symptoms. The honey adds sugar to provide energy.

Morning snack:

• cup of tea
• marshmallows or sugary sweets

You do not need PERT with this snack because it is fat free, but high in sugar to provide energy.

Lunch:

• tuna sandwich
• packet of corn crisps (for example, Skips^®, Wotsits^®, Quavers^®),
• jelly
• chocolate biscuit

Take two 25,000 capsules. This meal is low in fat so you can reduce the dose of PERT to two capsules without getting lots of symptoms. The added sugar provides energy.

Afternoon snack:

• cup of coffee
• banana

You do not need PERT with this because it is a low fat snack.

Dinner:

• cottage pie
• vegetables
• scoop of sorbet with syrup
• glass of full sugar lemonade

Take two 25,000 capsules. This meal includes low fat food. This should help you reduce the dose of PERT to 2 capsules without getting lots of symptoms. The added sugar provides energy.

You can contact our specialist nurses on our Support Line if you are concerned about changing your diet or have diabetes.

If you have diabetes

If you have diabetes and you take metformin or DPP-4 inhibitors (Gliptins) without any other medication, you do not need to change any of your diabetes management.

If you take insulin 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  starchy 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. Sugar absorption is not affected by a lack of PERT.

You are only at risk of a hypo if you take medicine such as insulin that lowers your blood glucose levels. Make sure you have enough PERT to have with the starchy carbohydrate snack you take to maintain your blood sugars.

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.

Other medicines

Some other medicines may be less effective . This is particularly important for people who take medicines to prevent blood clots, seizures, and the oral contraceptive pill. If you are on the oral contraceptive pill, use another form of contraception while you have less PERT.

Talk to your doctor about your medicines.

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.
• But if the diarrhoea has started suddenly, speak to your doctor or nurse before taking loperamide. They should check you do not have an infection.
• 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 losing weight, speak to your dietitian or GP about taking some peptide based nutritional supplement drinks.
• 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.
• Some medicines may be less effective if you do not have enough PERT.

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. Remember that you can call our specialist nurses for support and information. Some medicines may be less effective if you do not have enough PERT.

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.

Contact your hospital team if you have had your whole pancreas removed (a total pancreatectomy) or have diabetes that is hard to control, and have run out of PERT. They will try to get some for you. Monitor your blood sugar levels carefully if you have diabetes.

Tell your pharmacist that you have completely run out, so your supplies can be prioritised if possible. If your pharmacist can not get any of the usual brands of PERT, they may be able to get other brands from overseas. These include PANCREAZE^® and Zenpep^®.

If you can’t eat because of your symptoms

Try to drink plenty of fluids. Try Lucozade^®, sports drinks or Dioralyte^®.

Peptide nutritional supplement drinks

Contact your GP and ask for a prescription for a peptide nutritional supplement. This might be Vital 1.5kcal^®, Survimed OPD^® 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 to, 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.

Foods you can eat without PERT

You can have these snacks as well as the supplement drinks:

• fruit – a handful sized portion at a time
• vegetable sticks, such as carrot, celery or cucumber
• small amounts of salsa, ketchup, balsamic vinegar, marmite or mustard. You could have tiny amounts with vegetable sticks for a different taste.

If you do not have diabetes, you can also try:

• sorbet
• marshmallows
• sugary sweets (but not chocolate, fudge or toffee).

These foods will not give you many calories, but they should not make your symptoms worse. They will fill you up a bit more than having the supplement drinks on their own.

You can eat other foods, but these may make any symptoms worse.

Suggested daily meal plan

This meal plan is for someone who weighs 80kg. Use the list above to change the amount of supplement drinks you have, depending on how much you weigh.

• Breakfast: 1 x supplement drink, cup of black coffee and a banana.
• Mid morning: 1 x supplement drink and carrot sticks.
• Lunch: 2 x supplement drinks flavoured with chocolate or coffee syrup and served with ice, and cucumber and celery sticks dipped in salsa.
• Mid afternoon: 1x supplement drink and an apple.
• Dinner: 1 x supplement drink and some carrot sticks with a smear of marmite. For dessert: 1 x frozen supplement drink served with a handful of strawberries, raspberries and a scoop of sorbet.