Nemolizumab - BAD Patient Hub

What are the aims of this leaflet?

This leaflet has been written to help you understand more about nemolizumab. It explains how it works, why it has been chosen for your treatment and the possible side-effects that some people experience. It also gives answers to some frequently asked questions and tells you where you can find more information.

What is nemolizumab and how does it work?

Nemolizumab is a biologic medicine. This means it is made using living cells and works with the body’s immune system.

It is used to treat skin conditions that cause inflammation (swelling, redness, and irritation), such as atopic eczema and nodular prurigo.

There are lots of messenger proteins in the body called cytokines which play a big part in inflammation. Sometimes, these proteins can send the wrong signals and make the skin more inflamed.

Nemolizumab blocks one of these proteins called ‘interleukin-31’ (IL-31). This helps reduce the inflammation and eases the problems caused due to atopic eczema or nodular prurigo. More specifically, nemolizumab reduces itching and pain which can improve quality of life and sleep.

Why have I been selected for treatment with nemolizumab?

You have atopic eczema which is severe enough to require treatment based on national guidelines. Nemolizumab is licensed for treating people with moderate-to-severe atopic eczema. You may be offered nemolizumab if:

you are aged 12 years and above
your body weight is at least 30 kg
your atopic eczema has not improved after trying at least one tablet medication (for example, ciclosporin, methotrexate, azathioprine or mycophenolate mofetil; this only applies to the NHS setting) or
if the above medicines cannot be used.

Nemolizumab is also licensed for treating moderate-to-severe nodular prurigo in adults. However, it is not yet widely available on the NHS for this condition.

Are there any alternatives to nemolizumab to treat eczema?

Most patients will have tried at least one of the tablet medications listed above before being offered nemolizumab. For adult patients there are other treatment options such as dupilumab, tralokinumab, lebrikizumab, baricitinib, abrocitinib and upadacitinib.

For children aged 12 years and over, dupilumab, lebrikizumab, abrocitinib and upadacitinib may be suitable alternatives.

For children aged 6 months and over with moderate to severe atopic eczema, dupilumab may be an option.

How do I use nemolizumab?

Nemolizumab is given as an injection under your skin. This method is called subcutaneous injection. The medicine comes as a pre-filled pen device.

A healthcare professional will teach you how to use the pen to inject yourself, and details are also given in the package leaflet.

Injections are given under the skin of the stomach or thighs using the pre-filled pen. If somebody else is giving you the injection, then it can be given in the upper outer arms. You will be provided with a special bin to dispose of your used ‘pens’ safely.

How often should I use nemolizumab?

Nemolizumab can be used as a long-term treatment.

For atopic eczema:

The first dose is 60 mg, which means you will get two 30 mg injections.
After that, you will have one 30 mg injection every 4 weeks, up to week 16.
If your skin has improved after 16 weeks, your dermatologist may change your treatment to one 30 mg injection every 8 weeks.

For nodular prurigo:

The first dose is 60 mg, which means you will get two 30 mg injections.
After that,
- if you weigh less than 90 kg, you will have one injection every 4 weeks,
- if you weigh more or equal to 90 kg you will have two injections every 4 weeks.

What should I do if I miss a dose?

If you miss an injection, use one as soon as possible. Then contact your dermatology team to check what to do next.

How do I store nemolizumab?

Nemolizumab must be stored in a refrigerator (between 2 to 8°C). It is recommended you keep the medicine in its original carton, to protect it from light. 󠄙The expiry date of each prefilled pen device should be checked prior to use.

Can I travel abroad while taking nemolizumab?

Please discuss your medication with your healthcare professional if you are planning to travel abroad.

If you do not have access to a refrigerator during travel, nemolizumab may be stored at room temperature (up to 25°C) for a single period of up to 90 days.

Can I use topical treatments for eczema while taking nemolizumab?

Yes, topical steroids and topical calcineurin inhibitors can still be used. Some people may also require other medications to maintain control of the atopic eczema.

What are the side effects of nemolizumab?

Studies have shown that nemolizumab is generally a well-tolerated treatment.

Common side effects (which may affect up to 1 in 10 people) include:

headaches,
hives
eczema

Some uncommon side effects (which may affect up to 1 in 100 people), include:

swelling of the face, lips, mouth, throat or tongue (angioedema)
injection site reactions (redness, rash, pain, irritation and bruising).

Swelling at the injection site is a rare side effect that may affect up to 1 in 1000 people.

It is important to talk to your healthcare professional as soon as possible if you have any new or worsening symptoms related to nemolizumab.

Potentially severe side effects:

Severe allergic reactions are very rare. Dial 999 or immediately go to a hospital Accident & Emergency department if you develop:

a swollen face/tongue
difficulty breathing
difficulty swallowing
feeling lightheaded
itching all over,
severe widespread rash

Afterwards, you should make sure that your dermatologist and GP have been informed of the reaction and you should stop using nemolizumab.

For more information, visit nhs.uk/conditions/anaphylaxis/

It is important to report suspected side effects of medicines. The Medicines and Healthcare products Regulatory Agency (MHRA) manages the Yellow Card scheme. This scheme collects information and safety concerns about medicines and medical devices. Anyone can report these side effects or concerns by using:

the Yellow Card website gov.uk/yellowcard or
the Yellow Card Scheme app by the Medicines & Healthcare products Regulatory Agency

What happens before starting treatment?

Before you start taking nemolizumab, you will have a consultation with your dermatologist/dermatology team including a clinical examination (this means they will look at your body/skin) and you will be asked about your medical history.

Can I have vaccines while taking nemolizumab?

Patients using nemolizumab should not be given any live vaccines, such as those for chickenpox, rubella (German measles), yellow fever, and some polio vaccines. Inactivated or non-live vaccinations can be used.

You should always make sure healthcare professionals are aware that you are taking nemolizumab before receiving a vaccination.

I have an allergy. Can I take nemolizumab?

People with allergies should discuss the topic with their dermatologist or pharmacist before using nemolizumab.

Does nemolizumab affect pregnancy and breastfeeding?

The effects of nemolizumab in pregnant women are not known. It is also not known whether nemolizumab passes into breast milk. As nemolizumab remains in the body after a dose is given, it is important to have a discussion with your doctor about using nemolizumab if you are considering pregnancy and/or breastfeeding.

What will happen if I need an operation or dental surgery?

There is no evidence from the clinical trials that nemolizumab increases the risk of severe infection. There is no data to suggest that nemolizumab should be stopped before surgical procedures. Please discuss this with your doctor or dentist.

Can I drink alcohol while taking nemolizumab?

There is no known interaction between alcohol and nemolizumab. UK guidelines recommend no more than 14 units of alcohol per week for both men and women.

Can I take other medicines at the same time as nemolizumab?

Most medicines are safe to take with nemolizumab. However, it is important that your GP and other healthcare professionals involved in your care are aware that you are using it.

Where can I get more information about nemolizumab?

This information sheet does not list all the side effects of nemolizumab. If you wish to find out more about nemolizumab, please speak to your doctor, specialist nurse or pharmacist. For further details, look at the drug information sheet which comes as an insert with your nemolizumab.

Weblinks to other relevant sources:

NICE | Information for the public: www.nice.org.uk/guidance/ta1077/informationforpublic

EMC: https://www.medicines.org.uk/emc/product/100635/pil#gref

Jargon Buster: www.skinhealthinfo.org.uk/support-resources/jargon-buster/

Please note that the BAD provides web links to additional resources to help people access a range of information about their treatment or skin condition. The views expressed in these external resources may not be shared by the BAD or its members. The BAD has no control of and does not endorse the content of external links.

This leaflet aims to provide accurate information about the subject and is a consensus of the views held by representatives of the British Association of Dermatologists: individual patient circumstances may differ, which might alter both the advice and course of therapy given to you by your healthcare professional.

This leaflet has been assessed for readability by the British Association of Dermatologists’ Patient Information Lay Review Panel.