Acquired
Haemophilia



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This website is intended for carers and patients living with haemophilia.

What is Qcquired Haemophilia

How is acquired haemophilia treated?

There are several types of treatment available but broadly these fall into two main areas:

• Stopping immediate bleeding (usually short-term)

• Reducing or getting rid of the antibody (inhibitor) that is causing the problem (usually longer-term)

Your doctor will decide what is the best combination of treatments for you depending on your individual circumstances.

Stopping the bleeding

This is the first priority. There are a number of products available that may be useful. Generally these involve injections of clotting factors directly into the veins, usually through a cannula (or drip). These may have to be given several times a day by doctors or nurses.

There are several types of clotting factors that may be used. Some are prepared from blood plasma donations whilst others are made in the laboratory using a method similar to that used for making many other medicines; these are called “recombinant” products.

Sometimes a drug called desmopressin (DDAVP) may be given if the bleeding is not too severe. This works by causing release of Factor VIII stores from the person’s body. It is given as an injection or in a drip.

Getting rid of the antibody

Again, several different treatments are used. Most involve taking tablets, sometimes for many weeks. This regime is usually started in hospital but may be continued after the person goes home.

Sometimes, a course of immunoglobulins (IVIg) is given first through a drip over 2–5 days. If this is successful, drug therapy may be unnecessary.

Occasionally, a technique called plasmapheresis is used which involves passing the patient’s blood through a machine to try to filter out the antibody.

Examples of drugs used to eradicate the inhibitor are:

• Steroids – usually prednisolone

• Cytotoxic therapy – many people have heard of these drugs as treatment for cancer. It is important to stress that acquired haemophilia is not a form of cancer although occasionally people can develop it when they already have cancer.

• Immunomodulatory therapy – where drugs are used that prevent the body producing antibodies to clotting factor

Your healthcare team will give you more specific information on the particular treatment that you have been prescribed.

How long will I be in hospital?

How will I know if I am bleeding?

Going home

Is there anything I should do?

Is there anything I shouldn’t do?

And finally:

How long will I be in hospital?

This varies depending on how severe the bleeding episode is and the treatment chosen. It is often as much as a few weeks.

How will I know if I am bleeding?

The signs and symptoms you will get will depend on where the bleeding is coming from but will probably include one or more of the following:

• Pain

• Swelling

• Loss of movement in limb

• Obvious bruising

• Blood in the urine

• Blood from the back passage (Red or Black)

• Feeling faint or very tired

• Severe headache

If you experience any of these, or any similar unusual symptoms, contact Accident and Emergency, your general practitioner, or a haemophilia centre at once.

Going home

After leaving hospital you will be monitored very carefully in the outpatient department.

The visits will usually include an examination by a doctor and blood tests.

Is there anything I should do?

Contact your Haemophilia Centre immediately if any signs of bleeding or bruising develop or if you get any unusual symptoms.

Also, remember that if you are worried about anything, the Centre staff will be able to advise you.

If the inhibitor has not been eliminated, try to protect yourself against knocks, falls and other injuries. Avoid activities which may put you at risk of injury and eat a normal healthy diet.

If you need dental work, contact your Haemophilia Centre for advice in advance as you may need some treatment beforehand.

Is there anything I shouldn’t do?

Don’t take aspirin or non-steroidal anti-inflammatory drugs e.g. ibuprofen, without specific medical approval.

Don’t take other drugs not given to you by your Haemophilia Centre without checking with them first.

Don’t have injections into your muscles if the inhibitor has not been eradicated.

And finally...

In at least half of the people affected by acquired haemophilia, treatment is successful, the inhibitor is eliminated and they can go back to leading a normal life. For the remainder, treatment will need to be ongoing. Once the inhibitor is gone, there is very little chance it will come back. The condition cannot be passed on to other members of your family.

Medical knowledge about acquired haemophilia is increasing all the time and new treatments may become available in the future. It is important to be positive.

Remember, if in doubt, ask!