Desferal

This page explains about a home infusion of desferrioxamine mesilate (Desferal)

What is desferrioxamine?

Desferrioxamine is a medicine that removes iron from the blood when too much has built up after blood transfusions.

People with beta thalassaemia major, sickle cell disease and other rare unexplained anaemias need regular blood transfusions.

Blood contains lots of iron – more than the body needs – so having regular blood transfusions will increase the amount of iron in the body. The body is unable to get rid of extra iron naturally so this medicine is needed. It can be dangerous if too much iron builds up in the body, particularly to the heart, liver and hormone system. This build up can cause long term and life threatening damage if it is not treated.

The medicine works by binding with the iron in the blood so that it can be removed in urine (wee) and faeces (poo). The effect of the medicine increases if it is given regularly and at a slow rate, so it is important to follow the treatment plan given by your team.

Why does my child need desferrioxamine?

The dose prescribed and the frequency of infusion usually reflects the degree of iron overload and the size of your child.

Your child will have regular blood tests called ferritin tests to show the amount of iron in the body.

While your child is receiving treatment, his or her ferritin levels will be monitored regularly and other tests may be undertaken, such as scans, to measure the amount of iron in the body.

How is desferrioxamine given?

It is given as an infusion under the skin (subcutaneous) using a ready-to-use needle and tube set connected to either a pre-filled balloon pump or to a syringe driver.

T34™ Ambulatory Syringe Pump

The infusion is given slowly usually over a period of 10 to 12 hours, usually overnight. Your child will have the infusion up to seven nights a week, depending on his or her needs.

Initially, your child will start on a small dose, which is then increased according to ferritin levels.

What are the side effects?

Dark brown urine

Your child’s urine may turn a dark brown colour while on treatment. This is a good sign that excess iron is being removed from the body and that the medication is working.

Local skin reaction

Pain and swelling at the infusion site is common and usually gets better without treatment. If it continues for longer than 24 hours, please contact your team for advice. Rotating infusion sites (see later section for details) will reduce the chance of reactions occurring.

Yersinia infection

This is a rare complication of treatment. If your child develops diarrhoea and fever, please contact the hospital.

Mild allergic reaction

Itching, watery eyes, sneezing may occur. If so, please contact your team as your child may need an antihistamine medicine and desferrioxamine will be discontinued

Severe allergic reaction

Some people develop a severe allergic reaction to desferrioxamine, although this is very rare. Signs of a severe allergic reaction include skin rashes and itching, high temperature, shivering, redness of the face, a feeling of dizziness or a headache, as well as shortness of breath or chest pain. If you are in hospital and your child shows signs of a severe allergic reaction, call a doctor or nurse immediately. If you are at home and your child shows signs of a severe allergic reaction, stop the infusion and call an ambulance immediately.

Important information
  • Keep all medicines in a safe place where children cannot reach them.
  • You will be told how to store the desferrioxamine infusions. Most can be kept at room temperature. However, some types (those infusions to be given over 48 hours or five days or combined with hydrocortisone) should be stored in the fridge at a temperature of 4°C. If your child is travelling outside the UK to a hot country, the infusion should also be stored in the fridge.
  • Take the infusion out of the fridge for at least an hour before giving to your child to let it reach room temperature.
  • If your doctor decides to stop treatment with desferrioxamine or the medicine passes its expiry date, return any remaining medicine to the supplier company. Do not flush it down the toilet or throw it away.
  • If you forget to give your child a dose and it is within a few hours of when the dose was due, give it as soon as you remember. Otherwise, do not give this dose but wait until the next dose is due. Do not give a double dose.
Rotation of infusion sites

One important factor in making subcutaneous infusions less painful and reducing irritation at the infusion site is to rotate the position on the body where you give the infusion. There are several areas of the body suitable for giving subcutaneous infusions. As a general rule, suitable areas are those with some fat below the skin, so the thighs and abdomen tend to be most suitable in children. As your child grows, other areas may become suitable as well, such as the upper arms but these vary from child to child.

It is important to rotate the infusion sites each time. Infusing the medicine into the same area all the time will cause a fatty lump to form. While these are not dangerous in themselves, medicine will be absorbed more slowly through them.

The infusion equipment
Desferrioxamine is given as a subcutaneous infusion using a ready-to-use needle and tube set previously known as a Thalaset®.

Thalaset® is made from skin friendly polyethylene (PE) and polyurethane (PUR) tubing. Both reduce the risk of contact allergies commonly associated with tubing made from polyvinylchloride (PVC). The skin friendly adhesive eliminates the need for an extra dressing and the cotton backing has a translucent window for monitoring the injection site.

Thalaset ®
Sofset
Sof-Set
Sofserter
Sof-serter

Sof-Set Subcutaneous Infusion Sets uses a flexible Teflon cannula to achieve the ultimate in user comfort and convenience. These are the optimum product for use in any long term subcutaneous application. The recent introduction of the shorter catheter length of the Sof-Set Micro extends the range of applications, and provides extra comfort for those of a slimmer build. The MiniMed devices provides for pain free trouble free insertion of the cannula, even in the most difficult of circumstances.

Sofserter – The Minimed Sofserter device is designed to enable users to perform quick and effective insertion of the Minimed Sof-Set infusion products. This provides a unique degree of security, and allows for almost trouble free insertion of the set in all circumstances.

Using local anaesthetic cream

If your child prefers, local anaesthetic cream can be applied to the chosen infusion site beforehand according to the instructions on the tube. It is kept in place using an adhesive plastic dressing or polythene wrap and a bandage. It needs to be covered to allow time for the anaesthetic to be absorbed and effectively numb the skin. If your child would like to use local anaesthetic cream, please discuss this with your team who can prescribe it for you.

Giving the infusion
  1. Collect together all the equipment you will need:
    • A clean work surface or tray
    • Your site rotation chart
    • Sterile alcohol wipe
    • Pre-filled balloon pump / Syringe Driver
    • Thalaset® or butterfly infusion set
    • Tape
    • Sharps disposal box
  2. Prepare the work area and clean with the alcohol wipe
  3. Open all the equipment packages carefully
  4. Wipe the local anaesthetic cream from your child’s skin
  5. Wash your hands thoroughly with soap and water
  6. Attach the infusion set to the balloon pump, making sure it is screwed on firmly
  7. Allow the tubing to fill up to the end by releasing the clamp, allowing the fluid to flow along the tubing until it reaches the end of the needle
  8. Close the clamp
  9. Remove the sticky backing from the dressing and the protective cover from the needle
  10. Lift the skin in the chosen injection area between your thumb and index finger
  11. Insert the needle at a 90° angle to the skin surface – like putting a drawing pin into a board.
  12. Press the dressing around the needle firmly to make sure the needle stays in place, adding additional tape if required
  13. If you are using the alternative needle set, or butterfly, you will be shown how to put this in under the skin
  14. Release the clamp to start the infusion
  15. Check the infusion site for any leakage, which may show that the needle has been displaced
  16. Once the infusion has been completed, remove the needle and dispose of both the pump and infusion set in the sharps box.
Arranging medicine and supplies

The pump and supplies including tape, sharps bin, even a fridge if required, are supplied to you from an independent company. Once your child’s team has written up the prescription and contacted the company, they will liaise with you directly about delivering the medicine and supplies.

It is important that you notify the company or the team looking after your child if you are planning a holiday.

Advertisements