Haemochromatosis - Treating haemochromatosis

Haemochromatosis is usually treated with a procedure called a phlebotomy, which involves removing iron-rich blood from the body in a similar way to blood donation.

The amount removed is roughly the same as the amount removed in a blood donation – around 500ml (just under a pint).

There are two stages in phlebotomy therapy:

  • induction – where blood is removed on a frequent basis (usually weekly) until your iron levels are normal (this can sometimes take up to a year) 
  • maintenance – where blood is removed on a less frequent basis (usually every two to four months) to keep your iron levels under control

Chelation therapy

There may be some circumstances in which you are unable to be treated with phlebotomy for medical reasons, for example if you have:

  • heart disease
  • anaemia (lack of red blood cells)
  • unusually thin or fragile veins that make it difficult to remove your blood

In this case, an alternative treatment involves taking medication to help remove iron from your blood, known as chelation therapy.

Deferasirox is a medication increasingly used during chelation therapy. It works by locking on to or binding the iron molecules in the body, before releasing them through urine or stools.

Deferasirox is available in tablet form and most people need to take one tablet a day.

Side effects of deferasirox include:

These side effects should pass once your body gets used to the effects of the medication.

Deferasirox is unlicensed for the treatment of haemochromatosis. This means deferasirox has not undergone clinical trials to determine whether it is effective and safe to treat the condition.

However, some experts will use an unlicensed medication if they think it's likely to be effective and the benefits of treatment outweigh any associated risk. This is thought to be the case with deferasirox.

If your specialist is considering prescribing an unlicensed medication to treat haemochromatosis, they should tell you it's unlicensed and discuss possible risks and benefits with you.


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