Guide for Desferal Home Infusion for Patients and Parents



INTRODUCTION

Multiple blood transfusions Treatment with DESFERAL infusion.
Iron overload (excess iron) Urinary iron excretion
Damage to important organs (heart, liver, etc.) Reduction of body iron levels
Prevention of damage to important organs

Regular blood transfusions are needed when treating patients with Thalassaemia major and sickle cell disease.

Unfortunately transfusions lead to iron overload; the extra iron is stored in the heart, liver and other important organs. If it is not treated, it will eventually cause severe damage to these organs.

DESFERAL (Desferrioxamine mesilate) is a medication that removes excess iron from the body, eliminating it mainly in the urine.

DESFERAL may be administered by slow subcutaneous infusion (under the skin), using an infusion pump. It may be used 4 to 7 times a week, depending on the degree of iron overload. Infusions are more conveniently administered at night.

DESFERAL can also be used intravenously or through a catheter, as a portocath.

Please read and follow carefully the infusion guide. Your doctor/ nurse will work together with you until you get a hand of it.



STEPS TO BE FOLLOWED DURING DESFERAL INFUSION


  1. Get everything you need: the butterfly needle (25 or 27), alcohol, gauze, adhesive tape, the syringe with the medication and the infusion pump.
  2. Clean the working area.
  3. Wash your hands carefully.
  4. Dissolve the content of each Desferal vial in distilled water. Approximately 3 ml of water are recommended for each vial.
  5. Place the butterfly needle in the syringe.
  6. Draw this solution up into the syringe; it should fill it up to the tip of the needle. This means approximately 10-20 ml in the syringe. (this volume varies for each patient).
  7. Choose the injection site. Use the rotation map as a guide.
  8. Clean the injection site with alcohol and cotton or gauze. Clean the skin with circular movements, beginning from the center and moving outwards the circle.
  9. Remove the needle tip cap. Don't touch the needle.
  10. Pinch the skin around the injection site. Insert the entire needle at a 45 degree angle.
  11. Fix it with adhesive tape.
  12. Make sure the infusion pump is correctly assembled.
  13. Begin the infusion, turning the pump on.
  14. Fix the pump with adhesive tape.
  15. Occasionally, check the infusion site for redness, leaking or displacement of the needle.
  16. When the infusion is over (after 8-12 hours), turn the pump off. Carefully remove the tape and the needle.
  17. Dispose the needle and the syringe in an appropriate recipient.


ROTATING THE INFUSION SITES.

(Site rotation map)

DAYS 6 AND 7: Choose the lateral aspects of the waist ("love handles").

Regularly rotating the infusion sites allows for appropriate absorption of the medication and decreases the risk of skin lesion and scars. The most common infusion sites are the abdominal area, the thighs and the upper part of the arms.

GUIDE

  1. Choose a different infusion site for each day of the month.
  2. Note down the site and date of each infusion in your rotation map, as it is shown in the picture.
  3. Use a new map every month.

DESFERAL STORAGE GUIDE
  1. Store Desferal in a safe place, out of reach of children.
  2. Avoid heat and sunlight.
  3. Don't keep Desferal out of the refrigerator for more than 24 hours after dilution.
  4. Keep it preferably in a cool dark place.

DESFERAL SIDE EFFECTS

Desferal treatment may cause urine to become dark brown. This is expected to happen and it is not dangerous.

As with any medication, undesirable side effects can happen.

The most common ones related to subcutaneous Desferal infusions are pain and edema at the infusion site, which usually disappear in 24 hours. Cold pads in the infusion site help relieve pain.

Treatment with other medications is sometimes needed.

Allergic reaction is a rare event, however it can happen. It can be mild or severe, and may require the following treatment:

Mild symptoms: Itching, watering eyes, sneezing and fever.

Treatment: Oral anti-histaminic medication. Call the doctor/nurse for further instructions.

Severe symptoms: Sneezing, breathing difficulties, thoracic pain, edematous eyes or mouth.

Treatment: The medication should be discontinued. Call your doctor or your treatment center immediately.


YERSINIA

Some infections, usually not severe, can get worse with Desferal use.

This is specially true with Yersinia infections, which sometimes cause fever, abdominal pain and diarrhea.

If you detect these symptoms, discontinue the medication and contact your doctor.


TREATMENT COMPLIANCE

In order to be effective, Desferal infusions must be administered according to doctor recommendations, usually not less than 4 times a week.

If Desferal is not appropriately used, severe complications caused by iron overload, such as hepatic and cardiac problems, may occur.

Iron overload should be monitored closely through blood and urine tests in order to evaluate treatment effectiveness and patient compliance.

A lot of research is being carried out to determine the effectiveness of an experimental oral medication to reduce body iron to safe levels.


INFUSION PUMP



Check the infusion pump models and prices.



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