Frequently asked questions
Injecting Hemlibra
Who should I tell if I am having trouble with subcutaneous injections?
Once you have been trained you should be able to inject Hemlibra at home by yourself or with the help of a caregiver. Tell your doctor or nurse if you are not confident with performing subcutaneous injections.
You may find the following video useful, which shows you how to inject Hemlibra, or view a guide on how to administer Hemlibra using the PARIS technique.
What if I break a vial or it’s not sealed well?
Inspect each vial before use. Do not use if they appear damaged, the cap covering the stopper is missing or if they have been dropped. Contact your haemophilia centre and provide the batch details of the affected vial. Keep the vial in the correct storage conditions as you may need to return it when you next attend your centre.
What if the liquid looks strange?
Before using Hemlibra, check the solution for particles or discolouration. The solution should be colourless to slightly yellow. Do not use if it is cloudy, hazy, discoloured or contains visible particles. Contact your haemophilia centre and provide the batch details of the affected vial. Keep the vial in the correct storage conditions as you may need to return it to your centre.
I’m having trouble drawing up the liquid (getting it into the syringe).
Hemlibra is a viscous liquid, which means it is quite thick. Initially, you might find it difficult to draw it up into the syringe, until you get used to it. Talk to your doctor or nurse if you continue to struggle.
Do I have to wait to have the injection after drawing up the solution in to the syringe?
No. Once the syringe has been filled with Hemlibra, the injection must be given immediately. Do not refrigerate the solution in the syringe.
How should I throw away everything I used to inject Hemlibra?
Everything should be placed in a sharps bin once used. Make sure you use new items for each injection and dispose of them after a single use.
Can I save a part-used Hemlibra vial for my next injection?
No. Only use the vial once. After you inject your dose, throw away any unused Hemlibra left in the vial.
I keep getting soreness after injections, what should I do?
Injection site reactions are a very common side effect that some people get with Hemlibra. Make sure that you rotate the injection site with each injection. If you have signs of redness, itching or pain at the injection site, tell your doctor or nurse.
View a guide on how to administer Hemlibra using the PARIS technique, which details rotating injection sites.
Taking Hemlibra
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. If you have a MedicAlert bracelet or necklace, or a HealthID profile, you could consider updating your information. It is up to you whether you tell your friends and family about your treatment, but it may help to talk to people that are close to you so that they can support you. It’s a good idea to carry information about your medicines, such as your patient alert card, in case you see a different doctor, or need to see a doctor when you are away from home.
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?
There have not been any studies to specifically test how Hemlibra interacts with other medications.
If you were previously taking factor VIII replacement therapy as prophylaxis, this can be continued for the first 7 days of Hemlibra treatment.
Bypassing agents are medicines that help the blood to clot but work differently to factor VIII. They are used to manage haemophilia A if people have inhibitors to factor VIII. Examples of bypassing agents include activated prothrombin complex concentrate (aPCC) and recombinant activated factor VII (rFVIIa). Bypassing agents must be stopped the day before starting Hemlibra treatment.
Clinical experience indicates Hemlibra interacts with aPCC. Serious and potentially life-threatening side effects can occur when aPCC is used in people who are also receiving Hemlibra. Use of aPCC should be avoided unless no other treatment can be used. See the package leaflet contained in the box with your medicine, the guide for patients/carers and patient alert card for additional information.
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. Prophylaxis with Hemlibra maintains a consistent level in your blood between doses for the whole time that you are on treatment.
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.
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 people trying to conceive, or of Hemlibra in people who are pregnant.
Can I combine Hemlibra doses?
Different Hemlibra concentrations (30 mg/mL and 150 mg/mL) should not be combined in a single injection when making up the total volume to be injected.
What should I do if I forget to take Hemlibra?
If you forget your scheduled injection, inject the forgotten dose as soon as possible up to the day before the day of the next scheduled dose. Then, inject Hemlibra as scheduled. Do not inject two doses on the same day 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 haemophilia team are happy with how your treatment is going. Some people have been on Hemlibra for over seven years.
Can I drive or use machines while taking Hemlibra?
Hemlibra is not likely to affect the ability to drive or use machines.
Storing Hemlibra
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 has 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.
Lifestyle
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 severe and moderate haemophilia A to try to be as healthy as possible; eat well and keep hydrated. The Haemophilia Society and the World Federation of Hemophilia 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 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?
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.1
Reference: 1. Srivastava A, et al. Haemophilia. 2013;19:e1–47.
Travelling with Hemlibra
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 your doctor or nurse 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 they are not damaged during the flight.
What about my factor VIII?
You may need to carry supplies of factor VIII in case you have a bleed. You will need to carry this in your hand luggage as well. Check the product information provided with the factor VIII replacement therapy and/or talk to your nurse or doctor.
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