Useful Resources

Should I tell people I have started taking HEMLIBRA/changed medications?

Your regular haemophilia A care team and your GP will be updated when you change medications. It is up to you whether you want to tell your friends and family about how you are treating your haemophilia A, but it may help to talk to people that are close to you so that they can support you.

Can I get blood-borne diseases from HEMLIBRA?

HEMLIBRA is a therapeutic antibody made in the laboratory. It is not made from other people’s blood or plasma, so there is very little risk of developing a blood-borne disease.

Are there any other medications that I should not take with HEMLIBRA, or need to be careful with?

Stop taking any treatment with bypassing agents (aPCC and rFVIIa) the day before starting HEMLIBRA. Because HEMLIBRA helps your blood to clot, taking other clotting medicines at the same time can make the blood clot too much. You should only use aPCC if advised to do so by your haemophilia A care team.

Can I take more HEMLIBRA if I wake up with pain?

No. If you think that you are having a bleed, you must not take extra HEMLIBRA. You may need to talk to your doctor or nurse if the pain is severe.

Should I take more HEMLIBRA if I am going to play sport?

No. HEMLIBRA is not an on-demand treatment, you must take it only once a week, once every two weeks, or once every four weeks, on the day that you chose. Prophylaxis with HEMLIBRA at the proper dosage makes sure that the levels in your blood are stable for the whole time that you are on treatment. Having stable HEMLIBRA levels was shown to reduce the number of bleeds for the majority of people in clinical trials.

What should I do if I forget to take HEMLIBRA?

If you forget your scheduled injection, inject the forgotten dose as soon as possible before the day of the next scheduled dose. Then, continue to inject the medicine once a week or as scheduled. Do not inject a double dose to make up for a forgotten dose. If you are not sure what to do, ask your doctor or nurse.

How long will I be on HEMLIBRA for?

HEMLIBRA is intended for long-term treatment. Usually you will continue taking HEMLIBRA as long as you and your doctor or nurse are happy with how your treatment is going. In the clinical trials of HEMLIBRA, some people have been on HEMLIBRA for over 3 years.

Can I stop taking HEMLIBRA if I haven’t had a bleed for a while?

Great news that you haven’t had a bleed in a while! However, you still need to keep taking HEMLIBRA so that you are protected from future bleeding episodes. Do not stop taking HEMLIBRA without talking to your doctor or nurse.

Can I have a treatment break?

Do not stop taking HEMLIBRA without talking to your doctor or nurse.

I want to start a family, is this OK while taking HEMLIBRA?

Ask your doctor or nurse for advice before using this medicine if you are trying to conceive. There are no clinical studies of HEMLIBRA use in patients trying to conceive, or of HEMLIBRA in pregnant patients.

Can I drive or use machines while taking HEMLIBRA?

HEMLIBRA has no influence on the ability to drive or use machines.

How do I store HEMLIBRA at home?

Store HEMLIBRA in your fridge between 2°C and 8°C in the original box to protect from light. Do not freeze HEMLIBRA and do not shake the vials. Keep out of the sight and reach of children. Do not use after the expiry date stated on the side of the box and the vial label (the date refers to the last day of the month). Speak to your haemophilia centre if you would like more information on storing medications at home.

Can I take HEMLIBRA out of the fridge?

Once removed from the fridge, unopened vials can be kept at room temperature (below 30°C) for a total of 7 days. Discard any vial that has been kept at room temperature for more than 7 days or have been in temperatures above 30°C.

Where should I keep my injection supplies?

Keep injection equipment safe and stored away in a cool, dry environment. It is a good idea to keep everything together in a box. Make sure that all supplies are kept out of the sight and reach of children.

Should I change my diet?

You do not need to change your diet when you are taking HEMLIBRA, but it is important for anyone with haemophilia A to try to be as healthy as possible; eat well and keep hydrated. The Haemophilia Foundation and the World Federation of Haemophilia have lots of resources on trying to maintain a healthy diet.

Can I drink alcohol?

HEMLIBRA is not affected by drinking alcohol, however it is recommended you stick to government alcohol limits and unit guidelines.

Is smoking tobacco OK?

The effects of smoking when taking HEMLIBRA have not been tested. However, it is best to stay healthy when you have haemophilia A. If you are a smoker, you could consider speaking to your doctor or nurse about ways to reduce or stop smoking.

What exercise is OK to do?

When you have haemophilia A, it’s really beneficial to stay active when you can. While you are taking HEMLIBRA you can carry on with the sports that you usually enjoy. Some suitable activities include swimming, cycling, golf or playing badminton. Always talk to your doctor or nurse before starting new activities.

What do I need to know when travelling with HEMLIBRA?

If you need to travel with HEMLIBRA, remember that it can remain out of the fridge for up to 7 days if necessary. However, it is recommended that you store your HEMLIBRA vials in a fridge whenever possible, even when travelling. Remember to also take your injection supplies and sharps bin with you to safely dispose of your used syringes, needles and vials.

Can I take HEMLIBRA on an aeroplane?

If you are travelling by aeroplane, talk to your doctor or nurse as they may provide a letter to give to the airline. If you are on a long flight, the airline may be able to store your medication in a fridge. You should carry your HEMLIBRA vials with you in your hand luggage so that they do not get shaken.