The ongoing supply issues surrounding pancreatic enzyme replacement therapy (PERT –
under the product brands: Creon®, Nutrizym® and Pancrex®) has progressed. The current
supply issues mean some people are running out of PERT, or experiencing difficulties or
delays in accessing PERT.
We have divided the advice for patients into 4 phases, depending on the supply available.
Jump to – Phase 1 – Supplies Available
Jump to – Phase 2 – Limited supplies
Jump to – Phase 3 – Insufficient supplies and you have abdominal symptoms
Jump to – Phase 4 – No supplies available
Pancreatic enzymes are still being delivered regularly into the United Kingdom, so we will
move backwards and forwards between these phases. We are not anticipating that any
individual patient will run out of PERT completely for very long. So, if we do have to use the
advice in phase 3 or 4, we hope this will only be for a short period of time.
Phase 1 – Supplies Available
Please make sure you
- Use your PERT as effectively as possible (store it correctly – below 25°, some brands recommend refrigeration, and make sure it does not go out of date including stock kept at different places such as work)
- Put your next prescriptions in as soon as your previous one has been dispensed (this will give the pharmacy time to source your medication)
- Check that each prescription has been approved by your GP surgery (especially as you will be requesting the medication early)
- 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.
Whilst the supply issues are ongoing, please DO NOT stockpile these medicines, as this will further drive the shortage. The Department of Health and Social Care have recommended we only supply 1-month of medication at a time. This does mean you will need to collect your prescriptions more frequently. (If you pay for your prescription consider applying for a pre-payment certificate to reduce the cost of prescription charges – click NHS Prescription Prepayment Certificate (PPC) | NHSBSA)
If you normally take Nutrizym 22, and are unable to tolerate Creon 25,000, please 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.
Taking the PERT throughout the meal rather than all at the start/ middle/ end improves how
well it digests the food and drinks you are eating / drinking.
Phase 2 – Limited supplies
If your pharmacist is unable to source PERT for you and you are waiting for a supply to be
delivered please take these steps to ensure your existing supply lasts as long as possible
- If you are not already taking one, speak to your doctor about taking a proton pump inhibitor (omeprazole® / pantoprazole®/ lansoprazole®) or an (H2)-receptor antagonists (Famotidine® / Nizatidine®) – these reduce the acid in your stomach and can make the enzymes more efficient. This means a dose that is lower 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.
- If you are not already taking vitamins and minerals, we recommend that you take a calcium and vitamin D supplement (containing 800iu Vitamin D and at least 500mg Calcium) and a multi-vitamin and mineral during this time (i.e. Sanatogen A-Z Complete® / Centrum Advance® / Supermarket own A-Z brand – please ensure these contain both vitamins and minerals)
Patients with CF should remain on their prescribed vitamins and minerals and discuss any concerns with your 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 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.
Tips if you are needing to take more capsules of a lower dose as your usual capsules are not available, and are struggling with the number of capsules you need to take
- If you have some high dose PERT left, take this with you when you go out, and use the lower dose capsules when you are at home to reduce the number of capsules you need to take out with you.
- 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.
- Ensure you do not chew or crush the tablets, this will make them less effective and can damage your gums or cause unpleasant mouth ulcers.
Phase 3: Insufficient supplies and you have abdominal (tummy) symptoms
If you reduce your dose and start experiencing symptoms such as diarrhoea, severe
bloating, or urgency to need to have your bowels open, here are some other steps to try to
reduce the symptoms:
- If you are struggling with diarrhoea, consider taking some loperamide / Imodium® 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.
- This 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 is likely to improve some of your gut symptoms but will not mean you absorb more nutrition or prevent malnutrition, so keep a close eye on your weight and strength.
- If you eat a lot of high fibre foods – consider reducing these as 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. Table sugar does not require enzymes to be absorbed in your gut, so Lucozade, adding sugar / honey / syrup to foods and nibbling on sugary sweets /marshmallows (not chocolate) can help keep your energy levels up. But these do not provide any other nutrition so make sure you are having protein, vitamins and minerals from other sources.
- If you are losing weight, please speak to your dietitian or GP about taking some peptide based nutritional supplement drinks. These are a specialist type of supplement drink that require a lot less enzymes for absorption, so 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 really useful if you cannot take PERT.
- If you have enough PERT to take some with your main meal, eat this as usual and use half the dose of supplement drinks in place of your other meals
Advice for people taking other medication
Please be aware that other medication you take may be less effective if you are not absorbing. This is particularly important for people who take medications to prevent seizures, the formation of blood clots and the oral contraceptive pill. If you are on the oral contraceptive pill, a secondary form of contraception should be used at this time. Please talk to your doctor or specialist team.
Phase 4: No supplies
Try not to worry. Running out completely will be a short-term issue as supplies are regularly coming into the country.
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 are:
- Losing weight (more than 2kg a month, or you are already underweight, and losing more than 1kg a month).
- Have uncontrollable bowel symptoms that are restricting your social / work /education activities.
If you are under the care of a hospital team, contact them and see if they have sufficient
supplies to issue a prescription for you – you will have to travel to the hospital to collect
these if they have some available.
Inform your pharmacist that you have completely run out, so your supply can be prioritised
if possible.
If you have had a total pancreatectomy, or have difficult to control diabetes and have completely run out of PERT
Please contact your hospital team, it is important that we access 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 to be prescribed (Vital 1.5kcal®,
Survimed OPD® 1.5kcal or Peptisip Energy HP®) – you can show them this leaflet. If you
are known to a dietitian – they can be contacted too, but due to the massive increase in
workload this PERT shortage is generating, you are likely to get these 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 alongside these.
For patients 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 (Pancrex® V powder) through this tube. 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 as the enzymes will not mix with your food. If you have a feeding tube, discuss this option with your dietitian.
For all patients 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.