Desferrioxamine treatment for iron overload : University College London Hospitals NHS Foundation Trust

People with blood disorders like sickle cell disorder (SCD) and thalassemia often need regular blood transfusions. However, transfused blood has excess iron. The iron from transfusions can build up in the heart, liver and other major organs. If this is not treated, organs can be seriously damaged.

Desferrioxamine is a medicine which removes the excess iron from the body. Desferrioxamine is also known as Desferal®. Desferrioxamine binds to the iron and leaves the body in pee and poo.

Your doctor will discuss your desferrioxamine treatment with you. They will decide on the best method to give you the medicine. The dose you get will depend on your needs.

Desferrioxamine is given as a slow infusion in two ways:

Under the skin (subcutaneously) via a Neria™ needle or a butterfly needle.
Through a vein. This can be through a temporary device such as a thin tube called a cannula. It can also be given through a device that stays in place for a while. This device is called a Port-a-Cath®.

There are three types of infusion devices that can deliver desferrioxamine:

A balloon infusor. This can be done at home or at the hospital.
A portable infusion pump. This can be done at home or at the hospital.
In a bag of saline through a large pump. This can only be done at the hospital. Desferrioxamine can be given when you have a transfusion.

You will need four to seven infusions a week. The number of infusions you need will depend on the amount of iron in your blood. You can arrange to have the infusions at times that suit you. Some people find it works well to have night-time infusions, while they sleep. The infusion usually lasts eight to 12 hours.

A balloon infusor is often called the ‘Easyflow infusor’ or ‘Baxter pump’. These are the names of the companies who make them. It is a lightweight, disposable device containing diluted desferrioxamine. We use it to give a slow, continuous infusion under the skin, through a Neria™ needle. This allows the desferrioxamine to be given at home over eight to 24 hours.

The desferrioxamine is inside the balloon, which is inside a plastic case (See Figure 1). As the desferrioxamine is infused, the balloon deflates and slowly pushes the medicine at a fixed rate through the Neria™ needle. As this happens, the balloon gets smaller and its position moves down the scale on the infusor bag.

What are the parts of a balloon infusor?

Figure 1 shows a photo of a balloon infusor. The parts of the infusor are labeled on the photo and listed below.

Luer connector – this connects the balloon infusor to the Neria™ needle line.
Luer cap – this fits on the end of the connector to stop the medicine leaking out.
Filter – this allows air bubbles to escape.
Tube – the medicine goes through this tube from the balloon to the Neria™ needle line.
Balloon – the medicine is inside this.
Volume indicator – this scale shows you how much medicine has been infused.
Fill port protector cap – the medicine is inserted through this port into the balloon infusor. The cap seals the port.
Code number - this is used to identify your balloon infusor.

Image 1 - balloon infusor.png — Figure 1. A photo of the parts of a balloon infusor

You will be taught how to use the infusor. We can also teach your relative or carer to use the infusor. We will give you all the equipment you need.

You can have your treatment at home, so you can still do your daily activities. The infusor does not need any machinery or batteries, so it is quiet.

Keep your spare infusors sealed in their outer wrappings and store them in the fridge. Don’t store the infusors in the freezer.

Keep the infusors you’re using, or about to use, in a clean place, away from direct sunlight, radiators and fires. Make sure children cannot reach them.

You can keep the infusor in your trouser pocket or in a small across-body bag. Some people sew pockets in their clothing to keep the infusor in.

You should discuss this with your doctor. There might be places we recommend you avoid if medical care is hard to access there.

Sciensus, the home delivery company, usually need at least two weeks’ notice if you want to change or pause your deliveries. If you give them less notice, the hospital will still be charged for the infusors because they will have already been made. The hospital will be charged even if you don’t get the infusors.

When you travel, pack the infusors in your checked luggage because it stays cooler there. If possible, keep the infusors with cool packs to help them stay at the right temperature.

Seal the empty infusor with the winged cap to stop any medicine left inside from leaking out. Don’t put the infusor in your bin at home. Sciensus will collect your empty infusors when they deliver your new ones. They will normally collect them every 2 weeks.

Put ALL needles in your sharps bin. They cannot go in your general waste.

To make sure that it’s working correctly:

Check the position of the top of the balloon against the scale on the side of the infusor (see figure 2). It might not be in line with number ‘1’ on the scale when you start.

Image 2 - ballon part.png — Figure 2. A photo of the balloon part of the infusor

A few hours after you start using the infusor, check that the balloon has moved down the scale.
After the medicine is infused check that the balloon is empty. There may still be a small amount of medicine still in it so the balloon might not be at ‘0’.
Your infusor might have yellow, blue, red, or green on it. The colour shows how long it takes for the medicine to infuse.

Checklist

Do not use your infusor if:

The name or hospital number on the label is not yours.
It is passed the expiry date on the label.
The balloon has burst.
There is any sign that the medicine has leaked from the infusor or tube.
The winged cap is missing.
The bubble does not appear.

Tips

Ignore small air bubbles within the infusor tube. They are not harmful.
If you need to disconnect the infusor before it is completely empty, place the winged cap on the end of the tube. This will stop it leaking.

Please do not change your infusor without a nurse training you first. To change your infusor, follow the steps below.

Equipment

Neria™ needles (for injections under the skin)
Alcohol swabs. Use these to clean your skin. You can also use these to clean the access port of an indwelling line such as a PICC line
Sharps bin – to put used needles in
Cleaning solution – for your hands
Cleaning solution – for cleaning the area you will put the equipment on
Clear plastic dressing, such as Tegaderm® (if needed)
Saline flushes (sodium chloride 0.9%) if you are giving the medicine through an indwelling line.

If you need any extra equipment, ask a Haematology Day Care nurse or your clinical nurse specialist.

Steps

Clean the surface you put the equipment on and let it dry.
Collect the equipment and place it on the dry surface.
Check that the infusor label has your name and hospital number on it.
Check that the expiry date on the label hasn’t passed.
Wash and dry your hands.
Open the infusor on the clean surface.
Remove the winged cap from the infusor.
Wait for a bubble of fluid to appear at the end of the tube.
Attach the infusor by twisting in a clockwise direction onto the Neria™ line.

Note: You might need to keep the Neria™ needle in place by putting an extra dressing over it. If the Neria™ needle doesn’t stay in place, please contact your clinical nurse specialist (CNS) to discuss what else can be done (see the contact details section).

1. Select the site to insert the needle

The best places to insert the needle are in your abdomen, thighs and upper arms. The diagram below shows you exactly where these places are.

subcut needle sites (image free to use from google images).png — Figure 3. Places to insert the needle

Change the spot where you insert the needle each time. Doing this helps the medicine to be absorbed properly. It can also stop your skin being irritated and scar tissue forming.

2. Clean the skin where you will insert the needle

Using an alcohol wipe, clean the skin in a circular motion. Start in the middle and move outward. Wait until your skin is dry before doing the next step.

3. Pinch the wings on the back of the Neria™ needle

step 3.png

4. Remove the cover on the sticky pad

step 4.png

5. Remove the protective needle cover

Remove the needle cover by gently pulling and twisting it. Make sure you don’t touch the needle when you do this.

step 5.png

6. Pinch your skin where you’re going to insert the needle

step 6.png

7. Insert the needle

Insert the Neria™ needle at a 90-degree angle. Then press the sticky pad to secure it to your skin.

step 7.png

8. Secure the needle and infusion line with the Neria™ sticky pad

When you secure the infusion line with the sticky pad, make a small loop in the line to let it move easily. Make sure there are no kinks in the line as kinks can block the flow of medicine.

9. Check the area where you inserted the needle

From time to time check the area where you inserted the needle for redness, fluid leaks, and to make sure the needle has not come out.

10. Remove the needle and tube
When the infusion is complete, remove the sticky pad and take the needle out. Put the used needle and tube in the sharps bin.

When the sharps bin is full, return it to Haematology Day Care. A member of staff will dispose of it and give you a new one.

Detailed instructions on how to use the Neria™ infusion set come with the set. For more details about the Neria™ infusion set, please visit convatec.co.uk. Neria is a trademark of the Convatec groups of companies.

The images from step 3 to 7 were produced by Convatec and are reused with permission.

Let your doctor know as soon as possible if you have any of the side effects listed below.

Most common side effects

Pain
Swelling
Reddening and itching of the skin where the needle was.

Sometimes you will get these symptoms along with others such as fever, watery eyes, sneezing, aching joints, aching muscles, headaches and nausea.

Less common side effects

Dizziness and visual or hearing problems. For this reason, patients having desferrioxamine have hearing and vision tests each year.

Very rare side effects

Shortness of breath
Skin rash
Weakness of the muscles
Loss of sensation (for example numbness).
Stomach pain, being sick and diarrhoea. This may be due to an infection called yersinia. If this happens, stop your desferrioxamine infusion and contact your hospital team immediately using the contact details below.