• Reference Number: HEY1403-2024
• Departments: Gastroenterology, Nutrition Support
• Last Updated: 1 January 2024

Introduction

This leaflet has been produced to give you general information about Teduglutide. Teduglutide is a drug that can help the absorption of nutrients, fluid and electrolytes from the small bowel.

Most of your questions should be answered in this leaflet. You can speak with members of the Nutrition Team to discuss the benefits and risks of taking Teduglutide before you consider or start treatment. If after reading this leaflet you have any concerns or require any further explanation, please discuss this with a member of the Nutrition Team.

What is Teduglutide?

Teduglutide is a growth hormone which stimulates growth in the lining of the small bowel. It is called Glucagon peptide-2 (GLP-2) and is already produced by the body.  Increasing the growth of the small bowel lining will help its ability to absorb nutrients, fluid and electrolytes.

Is Teduglutide suitable for me?

Teduglutide is used to treat Adults who have short bowel syndrome and have been taking Parenteral Nutrition for a period of 6 months post-surgery with the aim to reduce the number of nights feeding or even stop the Parenteral Nutrition or Fluid Supplementation.

Criteria for being offered the opportunity to take this medication  requires: a stable home prescription  requiring no changes within a period of 3 months, no hospital admissions within 3 months and no planned surgery scheduled within 1 year.

Before you start taking Teduglutide the Nutrition Team will review your past medical and surgical history.

When and how do I take it?

Teduglutide is an injection given under the skin (subcutaneous) once per day, you or a family member will receive training on how to mix them together and give the injection, by the allocated homecare company nurse who will provide additional support visits until you are happy with giving your medication.

The Teduglutide is a white powder in a glass vial that needs to be mixed with water for injection from a pre-filled syringe.

The dose is decided by your weight, your Nutrition Team will advise you of the dose. The dose may need to be changed or different monitoring may be required if you have any of the following conditions:

• Severely decreased liver function;
• Cardiovascular disease (high blood pressure or a weak heart);
• Decreased kidney function.  Members of the Nutrition Team will provide you with information.

The homecare company arranged by the hospital will deliver the Teduglutide and the equipment needed to administer the injection to your home every 4 weeks.

Because it is a long term treatment it is important to keep taking it every day.

Storage

Teduglutide should be stored at room temperature, below 25 degrees Celsius (25C).

Once mixed with water for injection it should be used immediately.

Do not allow to freeze.

Possible risks and side effects

• Injection site reaction; itching, redness and/or pain. Regularly changing where you do your injection can help with this.
• Fluid retention; swollen ankles, shortness of breath, weight gain.
• Protrusion of stoma, your stoma bag size may need to be changed.
• Bowel obstruction.
• Risk of cancer in the gastrointestinal tract; including, liver, gallbladder, bile duct or pancreas.
• If you have or are suspected of having a cancer Teduglutide will not be suitable for you.

Pregnancy and breast feeding

If you are pregnant or breast feeding Teduglutide is not recommended.

If you think you may be pregnant or planning to have a baby please share this with the Nutrition Team as soon as possible.

Pre-screening

Before starting Teduglutide a routine blood test will be taken including a micronutrient screen. A dietetic review including your weight will be required.

If you have a colon a colonoscopy will be performed to check that no abnormalities can be seen.

A baseline CT scan of your chest, abdomen and pelvis will be performed around the time of your treatment starting, along with an annual bone scan.

Follow-up

The nutrition team will continue to monitor your progress, you will be seen in Nutrition Team Clinic review at:

• Week 2 and Week 4
• Then every 4 weeks for 3 months
• Reducing to every 3 months for assessment when your dose is stable

You will have regular telephone contact in between visits with your Clinical Nurse Specialists to check if you are experiencing any problems or concerns you may want to discuss.

Follow up at this appointment will include weight and bloods with review of your weekly monitoring form and a physical assessment.

Your Parenteral Nutrition or Supplementation prescription may be changed during the follow up visit.

If you do not attend the nutrition clinic for ongoing monitoring your Teduglutide medication may be stopped. It is important to attend your follow up appointments to ensure you are on the correct dose and the medication is continuing to be of benefit to you.

Further discussions with you the Nutrition Team will take place if your Teduglutide is not continuing to be effective this will unfortunately be required to stop.

Every year for the first 2 years a CT scan or colonoscopy will be repeated, then every 5 years while you are taking Teduglutide.

General Advice and Consent

Most of your questions should have been answered by this leaflet, but remember that this is only a starting point for discussion with the healthcare team.

Consent to treatment

Before any doctor, nurse or therapist examines or treats you, they must seek your consent or permission. In order to make a decision, you need to have information from health professionals about the treatment or investigation which is being offered to you. You should always ask them more questions if you do not understand or if you want more information.

The information you receive should be about your condition, the alternatives available to you, and whether it carries risks as well as the benefits. What is important is that your consent is genuine or valid. That means:

• you must be able to give your consent
• you must be given enough information to enable you to make a decision
• you must be acting under your own free will and not under the strong influence of another person

Information about you

We collect and use your information to provide you with care and treatment. As part of your care, information about you will be shared between members of a healthcare team, some of whom you may not meet. Your information may also be used to help train staff, to check the quality of our care, to manage and plan the health service, and to help with research. Wherever possible we use anonymous data.

We may pass on relevant information to other health organisations that provide you with care. All information is treated as strictly confidential and is not given to anyone who does not need it. If you have any concerns please ask your doctor, or the person caring for you.

Under the General Data Protection Regulation and the Data Protection Act 2018 we are responsible for maintaining the confidentiality of any information we hold about you. For further information visit the following page: Confidential Information about You.

If you or your carer needs information about your health and wellbeing and about your care and treatment in a different format, such as large print, braille or audio, due to disability, impairment or sensory loss, please advise a member of staff and this can be arranged.