The most widely used treatment for haemochromatosis is called phlebotomy.
Phlebotomy 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 at normal levels; this can sometimes take up to a year
- maintenance – where blood is removed on a less frequent basis (usually every 2-4 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, such as:
- having heart disease
- having anaemia (lack of red blood cells)
- having unusually thin or fragile veins that make it difficult to remove your blood
If this is the case an alternative treatment involves taking medication to help remove iron from your blood. This is known as chelation therapy.
Deferasirox is a medication increasingly used during chelation therapy. It works by locking onto 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 (a type of research that tests one treatment against another) to determine whether it is effective and safe to treat the condition.
However, some experts will use an unlicensed medication if they think it is likely to be effective and benefits of treatment outweigh any associated risk, -thought to be the case with deferasirox.
If your specialist is considering prescribing an unlicensed medication to treat haemochromatosis, they should tell you it is unlicensed and discuss possible risks and benefits with you.
