Update June 2024: How to deal with Creon, Nutrizym or Pancrex supply issues

27th June 2024

OVERVIEW

Issue date: 18th June 2024 (Version 3). Please ensure you are reading the most up to date version.

The most up to date version can be found on the Pancreatic Society of Great Britain and Ireland (PSGBI) website: https://www.psgbi.org/position-statement-pert-shortage/. If you would like a printed copy, you can e-mail us: info@gutscharity.org.uk or call us: 0207 486 0341.

Advice for children and those with cystic fibrosis.

Please note the advice in this document is designed for adults with PEI. Specialist advice should be sought for children with PEI. People with cystic fibrosis will be cared for by a specialist centre. We have highlighted that some of the advice in this leaflet is not for people with CF. If you have CF, you should contact your specialist team if you have any concerns.

 

Advice for those with (non-pancreatic) Neuroendoncrine tumours treated with Somatostatin Analogues [Lanreotide (Somatuline®) / Octroetide (Sandostatin®)].

Please contact your specialist centre if you have symptoms that continue to escalate or you have any concerns.

Introduction  

Doctors prescribe pancreatic enzyme replacement therapy (PERT). It supports adequate digestion in people with pancreatic exocrine insufficiency (PEI). Most commonly PEI is caused by pancreatic cancer, pancreatitis and cystic fibrosis (CF). Many other clinical situations can cause primary or secondary PEI. These include type 3c diabetes, and gastrectomy or gastric bypass surgery. People who take somatostatin analogues [Lanreotide (Somatuline®) / Octreotide (Sandostatin®)] for the treatment of neuroendocrine tumours (NETs) are also at risk of PEI. PEI has many causes. But symptoms and their severity vary from person to person.

The ongoing supply issues surrounding pancreatic enzyme replacement therapy has progressed. PERT are supplied under the product brands: Creon®, Nutrizym® and Pancrex®. These supply issues are intermittent. They mean some people are running out of PERT. Or, they are having trouble getting PERT. This position paper gives advice to minimize the impact on your symptoms and quality of life. It is for times when you cannot access your normal PERT supply.

Current supplies (June 2024)

  • Creon® 10,000 is currently only supplied to hospitals.
  • Nutrizym 22® is out of stock until August 2024.
  • Creon® 25,000 is being delivered regularly but at 90-95% of the usual stock levels.
  • Pancrex® products are still available. But, there is no extra supply so they cannot fill the gap in the market.
  • Pharmacies have been provided with information to support them obtaining medication from abroad if they are not able to source any PERT from within the UK.

Symptoms of untreated PEI may include:

  • Bloating.
  • Excess wind.
  • Crampy abdominal pain.
  • Diarrhoea.
  • Urgency to open bowels.
  • Steatorrhea (pale floating stools).
  • Hard to manage blood glucose levels.
  • Vitamin and mineral deficiencies.
  • Weight loss and malnutrition.

These symptoms are usually treated by taking PERT and will recur if you are unable to take enough.

We may update this advice as we get more guidance. And, as we get more experience in managing PEI without enough PERT. We have divided the advice for people with PEI into 4 stages. The stage depends on the supply available. 

The advice for people with PEI has been split into 4 stages: 

Stage 1 – There are supplies available.

Stage 2 – There are limited supplies available.

Stage 3 – There are not enough supplies, and you have belly symptoms.

Stage 4 – There are no supplies available.

Pancreatic enzymes are still being delivered regularly into the UK. So, people will move back and forth between these stages. It is not expected for people to completely run out of PERT for long. So, if we do have to use the advice in phase 3 or 4, it is thought that this will only be for a short period of time.

To read more, please click on the blue bars with the cross (+) to expand the information.

STAGE 1 - THERE ARE SUPPLIES AVAILABLE.

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 a 1-month supply is issued at a time. This is to try and regulate supplies. So, if you now get 2-3 months of your PERT at a time, you will need to refill your prescriptions more often.

If you pay for your prescription, you should consider applying for a pre-payment certificate. This will help to reduce the cost of prescription charges. You can find more at https://www.nhsbsa.nhs.uk/help-nhs-prescription-costs/nhs-prescription-prepayment-certificate-ppc.

If you take Nutrizym 22, and can’t tolerate Creon 25,000, ask your GP to prescribe Pancrex 340mg. If they are unable to source this, please ask them to consider importing a different medication for you.

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.

We suggest you request your prescription soon after you get your previous one. When the pharmacy has dispensed the medication. This should give the local pharmacist time to get your medication.

 It is important that you check with your GP surgery that the prescription request has been authorised. This is because some GP surgeries have an automated system. It rejects repeat prescriptions if they are placed too early.

If you still receive a paper prescription. Ask for your PERT prescription on a single prescription so you can take it to another pharmacy if needed without disrupting the supply of your other medication.

You may need a change in your repeat prescriptions. This is if what you usually get is not available. There are three brands of PERT available currently in the UK. Some Pharmacies may also be able to order in medicines from abroad.

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.

Stage 1 summary:

Please make sure you:

  • Use your PERT as effectively as possible. Store it correctly and make sure it does not go out of date.
  • Put your next prescriptions in as soon as your previous one has been dispensed.
  • Check each prescription. Make sure it was approved by your GP surgery.
  • Do not stockpile PERT – this makes the whole situation worse.
  • Be prepared to receive a different brand of PERT to the one you are normally prescribed.

STAGE 2 - THERE ARE LIMITED SUPPLIES AVAILABLE.

How to reduce your dose to make your supplies last longer.

If your pharmacist can’t get PERT for you and you are waiting for a delivery, take these steps. They will help your existing supply last as long as possible.

Ensure you are taking a proton pump inhibitor. Examples include:

  • Omeprazole®
  • Pantoprazole®
  • Lansoprazole®

Or a (H2)-receptor antagonist. Examples include:

  • Famotidine®
  • Nizatidine®

These reduce the acid in your stomach and make the enzymes more efficient. This means a lower PERT dose than your usual dose may be effective if you have a proton pump inhibitor as well. If this does not appear to be effective, they may be stopped. This may not be appropriate for everyone so ask your pharmacist.

If you don’t take vitamins and minerals, we recommend that you take a calcium and vitamin D supplement. It should contain 800iu Vitamin D and at least 500mg Calcium. Also, take a multi-vitamin and mineral during this time.

For example:

  • Sanatogen A-Z Complete®.
  • Centrum Advance®.
  • Or, a supermarket’s own A-Z brand. Please ensure they have both vitamins and minerals.

People with CF should stay on their vitamins and minerals. They should discuss any concerns with their CF specialist dietitian.

How to reduce your dose to make your supplies last longer

First step:

  • Reduce the dose of PERT by one capsule with any snacks that you take.
  • Make the most of the meals you have and spread your PERT out throughout them to optimise digestion.

If this is not enough:

  • Reduce the dose of PERT by one capsule with each meal and snack, rather than skip whole meal doses.

If this is not enough:

  • Reduce the dose of PERT by one capsule with each meal and only have a small piece of fruit as a snack in order that you do not need to take any PERT with snacks.
  • Please contact your dietitian / nurse specialist or doctor if you are struggling with malabsorption symptoms or are consistently losing weight.

Example meal plans

This is an example of a meal plan with adequate PERT (11 capsules per day).

Meal Example of food consumed Usual PERT dose
Breakfast Bowl of cereal with milk and a yoghurt

Orange juice and cup of tea

2 x 25,000
Snack Cup of tea with 2 x rich tea biscuits 1 x 25,000
Lunch Tuna sandwich, packet of crisps, banana and a chocolate biscuit 3 x 25,000
Snack Cup of coffee and a piece of cake 1 x 25,000
Dinner Cottage pie, vegetables and a scoop of ice cream, Glass of lemonade 4 x 2,5000

Suggested changes if you do not have adequate PERT, but are nutritionally well. Your weight is stable or you have diabetes. Here the PERT use is reduced to 5 capsules per day.

Meal Example of food consumed PERT dose Explanation
Breakfast Bowl of cereal with skimmed milk and a yoghurt, Orange juice and cup of tea 1 x 25,000 Dose reduced and milk & yoghurt swapped to a low-fat one to reduce any symptoms of insufficient PERT
Snack Cup of tea with an apple 0 Biscuits swapped for an apple so PERT not required
Lunch Tuna sandwich, packet of corn crisps (Skips®/Wotsits® /Quavers® etc.), banana and a sugar free jelly. 2 x 25,000 Dose reduction and reduction in fat content to reduce symptoms
Snack Cup of coffee 0 No snack to reduce dose
Dinner Cottage pie (made with lean mince and fat drained off / turkey mince), vegetables and a scoop of sorbet/low fat yoghurt, sugar-free lemonade 2 x 25,000 Dose reduction and reduction in fat content to reduce symptoms

Suggested changes if you do not have adequate PERT but are losing weight and do not have diabetes. Here the PERT use is reduced to 5 capsules/day.

Meal Example of food consumed PERT dose Explanation
Breakfast Bowl of cereal with skimmed milk and a low-fat yoghurt with honey, Orange juice, cup of tea 1 x 25,000 Dose reduction, low fat products to reduce symptoms and added sugar to replace energy
Snack Cup of tea with marshmallows, sugary sweets 0 Fat free high sugar snack
Lunch Tuna sandwich, packet of corn crisps (Skips®/Wotsits® /Quavers® etc.), Jelly and a chocolate biscuit 2 x 25,000 Dose reduction, low-fat products to reduce symptoms and added sugar to replace energy
Snack Cup of coffee and banana 0 Low fat snack
Dinner Cottage pie, vegetables and a scoop of sorbet with syrup

Glass of full sugar lemonade

2 x 25,000 Dose reduction, low fat products to reduce symptoms and added sugar to replace energy.

These are tips if you need to take more low-dose capsules because your usual ones are not available. Plus, you are struggling with the number you need to take.

  • If you have some high-dose PERT, take it when you go out. Use the low-dose capsules at home. This will let you take fewer capsules when you go out.
  • If swallowing the capsules is putting you off your meals take some of them at the end of the meal. For instance, if you need to take 20 capsules with your meals take 5 at the start, 5 in the middle, and 10 at the end.
  • Do not chew or crush the tablets. This will make them less effective. It can damage your gums or cause mouth ulcers.

Advice for people with diabetes

You should not need to change any of your diabetes management if your diabetes is controlled by:

  • Diet alone
  • Metformin
  • DPP4-inhibitors (gliptins)

If you take insulin or medicine that can cause low blood sugar (hypos*), read the advice below carefully:

If you take less enzymes with your food, you are likely to absorb less starchy carbohydrate from food. Simple sugar absorption is not affected by a lack of PERT. This will mean that usual carbohydrate counting techniques may be less reliable. So, 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 goes below 4mmol/l. Typical symptoms include:

  • Sweating
  • Shaking
  • Blurred vision
  • Confusion
  • Palpitations

Always keep hypo treatment on you. You can find more on recognising and treating a hypo from your diabetes team or at this link: A5_Hypo_TREND.pdf (trenddiabetes.online).

You are only at risk of a hypo if you take medication that lower your blood glucose levels. You usually can’t have a hypo if you have diet-controlled diabetes. Or, diabetes treated with metformin/DPP-4 inhibitors (Gliptins) alone.

Monitor your blood glucose levels regularly: before meals, before bed, if you are feeling unwell, if you feel like you are having a hypo* and before driving. If you are driving long distances, make sure you check your blood glucose levels at least every two hours.

If you have a continuous glucose monitor, make sure you have the hypoglycaemic alarm set. If you are having more hypos than usual, you may need to contact your CF/diabetes team. They can give advice on adjusting your insulin doses.

If you have had a hypo, please make sure you have enough PERT. Take it with the starchy snack you eat to maintain your blood sugar. Examples of food include digestive biscuit, sandwich, scone or crumpet, etc.

Talk to your diabetes team for advice. They can help you reduce your insulin or medication if you start having hypos or need to lower your PERT dose.

Advice for people taking nutritional supplement drinks

If you take oral nutritional supplements. For example:

  • Altraplen®
  • Amyes®
  • Ensure®
  • Foodlink®
  • Fortisip®
  • Fresubin®

Ask your dietitian if they can be changed to a peptide or semi-elemental preparation. For example:

  • Vital 1.5kcal®
  • Survimed OPD 1.5kcal®
  • Peptisip Energy HP®

Many people can manage these peptide or semi-elemental drinks without extra enzymes.

These come in few flavours. But, you can add milkshake mixes or coffee syrups to expand the flavour range. Serve them chilled. Or freeze them into ice lolly moulds or ice cube trays to give you more options.

Sometimes you may be asked to try individual protein supplements or a fat-free nutritional supplements. For example:

  • Actagain Juce®
  • Altrajuce®
  • Ensure Plus Juice®
  • Fortijuce®
  • Fresubin Jucy® etc

You should sip these slowly to give your gut more time to digest them without PERT. If you have diabetes, monitor your blood sugar levels closely when taking these.

If you feel bloated with these, don’t worry. This is a normal effect of taking these without PERT. But, if it is affecting your life, please tell your dietitian.

Advice for people taking other medication

Other medication you take may be less effective. This can happen if you are not absorbing it. This is important information for people who take drugs to prevent seizures. It’s also important information for those who take drugs to prevent blood clots and the pill. If you are on the oral contraceptive pill, a secondary form of contraception should be used now. Please talk to your doctor or specialist team if this applies to you.

STAGE 3 – THERE ARE NOT ENOUGH SUPPLIES AND YOU ARE HAVING BELLY SYMPTOMS.

If you reduce your dose and start having symptoms like diarrhoea, severe bloating, or urgent need to have your bowels open, here are more steps to try.

  • If you have diarrhoea, consider taking Imodium/Loperamide® before your main 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.

Please note – if this is a new sudden onset of diarrhoea, infection should be ruled out before loperamide is used.

The above medicine is not suitable for people with CF – please contact your specialist CF Team)

  • Reduce the amount of fat in your meal to ½ of your normal the portion size of higher fat foods (Table 1). This will likely improve some of your gut symptoms. But, it will not increase nutrient absorption or prevent malnutrition. So, watch your weight and strength closely.
  • If you eat a lot of high-fibre foods, consider eating fewer. Very high-fibre foods can bind to enzymes and make them less effective. (Table 2) Healthy eating guidelines recommend adults try to eat 30g of fibre per day. We recommend not exceeding 40g at this time.
  • If you do not have diabetes, use sugary foods and drinks to increase your energy intake. Enzymes are not needed for your gut to absorb table sugar. So, examples such as:
    • Lucozade®
    • Adding sugar / honey / syrup to foods.
    • Nibbling on sugary sweets or marshmallows (not chocolate).

This can help keep your energy up. But they do not provide other nutrition. So, make sure you get protein, vitamins, and minerals from other sources.

  • If you are losing weight, please speak to your dietitian or GP. Ask about taking some peptide-based nutritional drinks. These are a special type of supplement drink. They need a lot less enzymes to be absorbed. So, they can usually be taken without PERT. These are called:
    • Vital 1.5kcal®
    • Survimed OPD 1.5kcal®
    • Peptisip Energy HP®

They are more expensive than other supplement drinks. But, they are very useful if you cannot take PERT.

  • If you have enough PERT for your main meal, eat it as usual. Then, use half the supplement dose for your other meals.

Advice for people taking other medication

Other medication you take may be less effective. This can happen if you are not absorbing it. This is important information for people who take medications to prevent seizures. It is also important for people who take medicine to prevent blood clots and those who use the pill. If you are on the oral contraceptive pill, a secondary form of contraception should be used now. Please talk to your doctor or specialist team if this applies to you.

Table 1: High fat foods and their lower fat alternatives

 

  Reduce your portion size of these. Have these instead:
Fats and oils Butter, lard, Ghee, Margarine, cooking oils Small portions of low-fat spreads

Use spray on cooking oils if needed

Dairy products Full fat milk / yoghurt

Cream

Crème Fraiche

Cheese

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 your protein intake, make skimmed milk powder up using skimmed milk and use in place of milk throughout the day

1.    Meat and Fish 2.    Fried foods or foods cooked in batter

3.    Skins / visible fat on meat

4.    Tinned fish, tinned in oil

5.    Meat and fish cooked without added oil

6.    Tinned fish, tinned in spring water / brine

Plant based protein sources Nut butters Pulses (e.g. lentils, chickpeas, beans (note portion sizes in table 4)

Quorn / Tofu – up to 100g

Fruit & vegetables No restrictions for low fat, see Table 4 for fibre suggestions
Carbohydrate based foods Croissants, pastries

Chips / Fried

Roast potatoes

Bread, Breakfast cereals

Potatoes, rice, pasta, cooked without added fat

Sauces / Condiments Cheese based sauces

Creamy sauces (bearnaise, hollandaise etc.,)

Large portions of mayonnaise

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

*Please note: Patients with Carcinoid Syndrome, please do not introduce foods you have previously been advised to avoid.

Table 2: High fibre foods. Aim for less than 40g fibre per day

Very high fibre foods High fibre foods
Food Portion providing 10g fibre Food Portion providing 5g fibre Food Portion providing 5g fibre
All bran® 40g Whole wheat pitta 1 large Weetabix® 2 biscuits
Brown pasta 250g (cooked) Rye based crackers (i.e. Ryvita®) 4 biscuits Shredded wheat® 2 biscuits
Baked Beans 300g Branflakes®/ Sultana Bran®, Fruit n/Fibre® 30g bowl Porridge / Readybrek® Large bowl (60g oats)
Dried apricots / prunes 120g Jacket potato with skin 1 medium Pasta (white) 250g (cooked)
Nuts and seeds 150g Wholemeal spaghetti 150g (cooked) Wholemeal bread 100g
Dried lentils / chick peas /Mung beans 100g (weight before cooking) Baked beans 150g Quorn® 75g
Dried soya beans / red kidney beans 70g (weight before cooking) Green beans / peas (fresh or frozen) 120g Spinach 5 tablespoons
Desiccated coconut 70g Sweetcorn 7 tablespoons Avocado pear 1 whole fruit

 

STAGE 4 -THERE ARE NO SUPPLIES AVALABLE.

If any one or more of these circumstances occur:

  • You are unable to get hold of any PERT at all.
  • You have not been able to get hold of enough PERT for more than 4 weeks and you: Are losing weight too fast (Ffast weight loss means losing more than 2kg a month) or you are already underweight and losing more than 1kg a month – OR – Have uncontrollable bowel symptoms that are restricting your social / work /education activities.

If you are under a hospital’s teams care, ask them if they have enough supplies to give you a prescription. You will need to go to the hospital to get the prescription if they have some.

Tell your pharmacist that you have run out. This will help prioritize your supply if possible.

Try not to worry, supplies are regularly coming into the country. So, this will be a short-term issue.

If you have had a total pancreatectomy or have hard-to-control diabetes. And, you have completely run out of PERT.

Please contact your hospital team. It is important that we get some stock for you as soon as possible. Please monitor your blood sugars carefully.

If you are unable to eat food because of your symptoms

Drink plenty of fluids. Include Lucozade®, sports drinks or Dioralyte®.

Ask your GP for a peptide nutritional supplement drink to be prescribed. You can request Vital 1.5kcal®, Survimed OPD® 1.5kcal, or Peptisip Energy HP®. You can show them this leaflet. If you are known to a dietitian, you can contact them too. But, due to the big rise in their workload from this PERT shortage, you will likely get them more quickly if you go directly to your GP.

These can be used instead of meals until you have your enzymes again. If you do not have diabetes, you can continue to have sugary foods and drinks with these. The table below shows how many supplement drinks you should take if you do not have any PERT at all.

These do not come in many flavours. But, you can add milkshake mixes or coffee syrups to expand the flavour range. Serve them chilled. Or freeze them into ice lolly moulds or ice cube trays. This will give you more flavour variety.

Recommended doses for peptide based nutritional supplement drinks if you are unable to absorb your food.

Body weight Supplements needed per day.

(Vital 1.5kcal® or Survimed OPD 1.5kcal® or Peptisip Energy HP®)

Below 40kg (6st 4lb) Contact a dietitian
40 – 50kg (6st 4lb- 7st 12lb) 4 x 200ml bottles = 1200kcal
50 – 60kg (7st 12lb – 9st 6lb) 5 x 200ml bottles = 1500kcal
60 – 70kg (9st 6lb – 11st) 6 x 200ml bottles = 1800kcal
70 – 80kg (11st – 12st 8lb) 7 x 200ml bottles = 2100kcal
80 – 90kg (12st 8lb – 14st 2lb) 8 x 200ml bottles = 2400kcal
Over 90kg (14st 2lb) Contact a dietitian

This may under-estimate your needs, if you lose weight or are very active, add in one more bottle per day. If you gain weight and were not intending too – reduce by 1 bottle per day.

Suitable foods to eat without PERT

Whilst you are on these supplement drinks you can snack on the following:

  • Fruit – a handful sized portion at a time.
  • Vegetable sticks (carrot, celery, cucumber).
  • Small amounts of salsa / ketchup / balsamic vinegar / marmite / mustard – tiny amounts can be used to give vegetable sticks a slightly different taste.

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

  • Sorbet
  • Marshmallows
  • Sugary sweets (not chocolate / fudge or toffee)

These foods will not give you many calories, but they should not make your symptoms worse and will fill you up a bit more than having the supplement drinks on their own. You can eat other foods, but these may worsen any abdominal symptoms you are experiencing.

A suggested daily meal plan for someone who weighs 80kg may look like this:

Breakfast: 1 x supplement drink, cup of black coffee and a banana

Mid morning: I x supplement drink, carrot sticks

Lunch: 2 x supplement drinks flavoured with chocolate coffee syrup and served with ice, 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; 1 x frozen supplement drink served with a handful of strawberries, raspberries and a scoop of sorbet.

For people who already have a gastric feeding tube

If you have a PEG, RIG, or NG feeding tube, you could take your PERT from a powdered source through this tube. An example is Pancrex V powder. These can be dissolved in water and flushed down the tube, but this must be done at the time you eat. This does not work with a jejunostomy or naso-jejunal tube. The enzymes will not mix with your food with these kinds of feeding tube. If you have a feeding tube, discuss this option with your dietitian.

For all people with with feeding tubes

If you normally receive some of your nutrition through a feeding tube, or have one that you are not currently using, it may be beneficial to increase your feed through the tube whilst you do not have any PERT. Please speak to your dietitian about this.

Support

Guts UK

Here at Guts UK charity, we support people with pancreatitis and pancreatic exocrine insufficiency. This includes pancreatic exocrine insufficiency caused by stomach surgery and diabetes. 

Contact by phone: 020 7486 0341 (9am-5pm Monday – Friday) 

Contact by e-mail: info@gutscharity.org.uk

Pancreatic Cancer UK:

Email nurse@pancreaticcancer.org.uk or call our Support Line 0808 801 0707; we’re open Monday, Tuesday, Thursday and Friday 9am to 4pm and Wednesday 10am to 4pm.

Cystic Fibrosis Trust:

Call 0300 373 1000 or 020 3795 2184, Monday–Friday 10am–4pm
Email helpline@cysticfibrosis.org.uk
Chat on FacebookTwitter or Instagram
Message on WhatsApp on 07361 582053

Neuroendocrine Cancer UK:

Helpline 0800 434 6476 Tuesday – Thursday 10:00am – 4:00pm

Email: through contact form on the website https://www.neuroendocrinecancer.org.uk/contact-us/

Pancreatic Cancer Action

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