UPDATE: How to deal with Creon, Nutrizym or Pancrex supply issues (2024)

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).

MealExample of food consumedUsual PERT dose
BreakfastBowl of cereal with milk and a yoghurt

Orange juice and cup of tea

2 x 25,000
SnackCup of tea with 2 x rich tea biscuits1 x 25,000
LunchTuna sandwich, packet of crisps, banana and a chocolate biscuit3 x 25,000
SnackCup of coffee and a piece of cake1 x 25,000
DinnerCottage pie, vegetables and a scoop of ice cream, Glass of lemonade4 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.

MealExample of food consumedPERT doseExplanation
BreakfastBowl of cereal with skimmed milk and a yoghurt, Orange juice and cup of tea1 x 25,000Dose reduced and milk & yoghurt swapped to a low-fat one to reduce any symptoms of insufficient PERT
SnackCup of tea with an apple0Biscuits swapped for an apple so PERT not required
LunchTuna sandwich, packet of corn crisps (Skips®/Wotsits® /Quavers® etc.), banana and a sugar free jelly.2 x 25,000Dose reduction and reduction in fat content to reduce symptoms
SnackCup of coffee0No snack to reduce dose
DinnerCottage pie (made with lean mince and fat drained off / turkey mince), vegetables and a scoop of sorbet/low fat yoghurt, sugar-free lemonade2 x 25,000Dose 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.

MealExample of food consumedPERT doseExplanation
BreakfastBowl of cereal with skimmed milk and a low-fat yoghurt with honey, Orange juice, cup of tea1 x 25,000Dose reduction, low fat products to reduce symptoms and added sugar to replace energy
SnackCup of tea with marshmallows, sugary sweets0Fat free high sugar snack
LunchTuna sandwich, packet of corn crisps (Skips®/Wotsits® /Quavers® etc.), Jelly and a chocolate biscuit2 x 25,000Dose reduction, low-fat products to reduce symptoms and added sugar to replace energy
SnackCup of coffee and banana0Low fat snack
DinnerCottage pie, vegetables and a scoop of sorbet with syrup

Glass of full sugar lemonade

2 x 25,000Dose 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.

UPDATE: How to deal with Creon, Nutrizym or Pancrex supply issues (2024)
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