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Information about botulinum toxin, how it works, how it's given, benefits and side effects.

Botulinum Toxin is a naturally occurring substance, made from bacteria. There are numerous brands of Botulinum Toxin; we currently use Xeomin as our first line product but we also use Dysport and Botox.

Botulinum Toxin is a muscle relaxant, reducing muscle overactivity/contractions.

Botulinum Toxin is given by injection (using very fine needles) into the muscle/group of muscles.

The toxin takes up to two weeks to be effective after the injection is given, usually between 4-7 days.

The effects are temporary. Depending on how you respond to treatment injections are usually every 3-4 months, occasionally longer.

You may be asked to complete a questionnaire to record the effects of the injections.

Botulinum Toxin relaxes the muscles that have been injected reducing the overactivity of the muscles. This may result in the following:

  • Reduction in involuntary movements
  • Ease of passive/active dressing and personal care
  • Ease of hand hygiene/care/splint application
  • Reduction in pain from muscle tightness

Individual goals of treatment will be discussed at your appointment.

Antibiotics
If you have been prescribed antibiotics and/or are feeling unwell there is a risk that the injections (if given) are not effective and therefore you may not be given the injections. A further appointment will be arranged if this is the case.

Anticoagulants
People receiving anticoagulants, medication to thin the blood e.g. Warfarin, may not be suitable for treatment. This is not an absolute contra-indication. Please bring your anticoagulant book with you to your appointment. An INR (International normalised ratio) level needs to be below 3 and taken within 48 hours of your appointment.

Family planning, pregnancy, and breastfeeding
There is limited data about the use of Botulinum Toxin in pregnant women. Animal studies have shown that high doses can cause foetal loss. However, case reports of patients having received Botulinum Toxin, or those who suffered from botulism during pregnancy, have not recorded any clear immediate risk to the newborn baby.

Similarly, there is limited evidence to suggest that Botulinum Toxin would have an adverse effect on a breast fed infant.

Since Botulinum Toxin is injected directly into the immediate area that needs treatment (muscle or gland mostly), with appropriate use, it does not enter the bloodstream in large amounts. This therefore means that it should not reach the baby at levels high enough to cause harm. Using Botulinum Toxin may mean that other oral medications, that do enter the blood stream, are no longer needed.

It is important that if you are trying to conceive a child or are currently pregnant that you raise this with your injector. Following this, our procedure is to decide on injections on a patient-by-patient basis. This may also involve the need for your clinician to consult with another doctor to ensure consensus on its use.

Religion
Botulinum toxin is manufactured using components taken from human blood, people of some faiths may not wish to have Botulinum Toxin injections.

Vaccinations
CNTW are advising a precautionary gap of seven days either side of Covid vaccinations before proceeding with Botulinum Toxin injections.

Doses
The dose will vary according to your needs. The dose may vary as your symptoms change.

The site of injections may vary according to your needs.

The side effects are generally temporary, and may include the following:

  • Flu type symptoms (headaches/fever/tiredness) following injections
  • Pain over the injection site
  • Infection near the injection site
  • Haematoma (bruising) over the injection site
  • Skin reaction around the injection site
  • Swallowing difficulties
  • Over weakening of the muscles
  • Widespread muscle weakness (systemic)
  • Anaphylactic reaction (severe allergic reaction)
  • Respiratory/breathing difficulties
  • Fatality (very rare, fewer than 1 in 10,000)
  • Compartment syndrome (an increase in pressure inside a muscle, which restricts blood flow and causes pain. If it happens suddenly, it can be serious and you will need treatment as soon as possible.)

Your clinician will discuss all relevant side effects with you at your appointment.

If you develop side effects please contact the Neuro-Rehabilitation Outpatient Department. Tel: 0191 287 5100, Monday to Friday; 8.30am – 4.30pm

Out of hours contact your GP or call 111.

In an emergency call 999.

A signed consent form is required before administration of Botulinum Toxin injections. This consent is only required once.

If you don’t understand any part of this leaflet or have any further queries please contact the Outpatient Department, Walkergate Park.  Telephone: 0191 287 5100

You can also visit United Kingdom Teratology Information Service UKTIS -https://www.medicinesinpregnancy.org/leaflets-a-z/botox-botulinum-toxin/

A full list of references is available on request from the Patient Information Centre, Tel: 0191 246 728

If you want to make a comment, suggestion, compliment or complaint you can:

We are always looking at ways to improve services. Your feedback allows us to monitor the quality of our services and act upon issues that you bring to our attention.  

You can provide feedback in the following ways:
- the quickest way for you to do this is to complete our short online survey at www.cntw.nhs.uk/yourvoice
- complete a Your Voice survey, available on wards, reception areas or from staff 
- other options for sharing your feedback and experience www.cntw.nhs.uk/yourfeedback

Patient Advice and Liaison Service (PALS)
PALS provide confidential advice and support, helping you to sort out any concerns that you may have about any aspect of your or your loved ones care.

We act independently when handling patient and family concerns, liaising with staff, managers and, where appropriate, relevant organisations, to negotiate prompt solutions. If necessary, we can also refer patients and families to specific local or national-based support agencies.

PALS
Tel: 0800 032 0202
Email: pals@nhct.nhs.uk
Post: FREEPOST PALS

South of Tyne
Tel: 0800 328 4397
Text: 07825 061 035
Email: pals@cntw.nhs.uk
Post: Patient Advice and Liaison Service, Garden Lodge, Hopewood Park, Ryhope, Sunderland, SR2 0NB

9.00 am – 4.30 pm, Monday to Friday
An answerphone is available at all times for you to leave a message. A member of the PALS team will aim to return your call as soon as possible.
 

Further information about the content, reference sources or production of this leaflet can be obtained from the Patient Information Centre. If you would like to tell us what you think about this leaflet please get in touch.

This information can be made available in a range of formats on request (eg Braille, audio, larger print, easy read, BSL or other languages). Please contact the Patient Information Centre Tel: 0191 246 7288

Published by the Patient Information Centre

2025 Copyright, Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust

Ref, PIC/110/0225 February 2025 V10

www.cntw.nhs.uk

Tel: 0191 246 7288

Review date 2027