Infliximab Treatment for Neurosarcoidosis

Background

Infliximab belongs to a group of medicines called ‘biological’ drugs. Infliximab is an anti-TNF agent, meaning it works by blocking a protein called TNF-alpha which is involved in inflammatory diseases. It is approved for use in neurosarcoidosis by NHS England.

Pre-administration investigations

You will undergo screening to rule out any infections e.g., tuberculosis (TB).

Should you have any of the following conditions, please ensure to inform your doctor: history of TB, immunocompromised, any current infections, history of heart failure, history of cancer, history of disease affecting the nerves.

Before treatment you will undergo blood tests, an ECG, chest x-ray and a pregnancy test if required.

Inform your doctor if you have ever had any conditions that affect the nervous system before treatment e.g., multiple sclerosis, Guillain-Barré syndrome, optic neuritis or if you have seizures.

How is infliximab given?

Before each infusion you will also undergo some baseline observations (weight, height, temperature, pulse and blood pressure).

You will receive three medicines before your infusion: paracetamol and an antihistamine 30-minutes prior and a steroid immediately before. If you are currently taking steroids, please inform your doctor.

You will be provided with an alert card and further counselling with regards to potential benefits and adverse effects.

Infliximab is given as an infusion and is administered for around 2 hours (this may get shorter as you have more infusions depending on how well you tolerate the drug).

After the infusion, you are required to stay in hospital for a further 2 hours to monitor for any potential reactions or side effects. 

Usually, you will have an infusion at week 0, 2 and 6. From then on, they are given every 4-8 weeks depending on your clinical situation.

Side effects

Infusion related reactions

Below are some of the side effects you may experience:

• Mild - mild fever, chills, nausea, headache, or itchy skin
• Moderate to severe - chest pain, shortness of breath, alteration in blood pressure, palpitations, elevated temperature, or hives (raised itchy rash).

Post-infusion reactions

These can occur from 24 hours and up to 14 days post infusion. You may experience:

• Joint stiffness
• Muscle aches and pains
• Hives (raised itchy rash)
• Fever
• Malaise (feeling unwell)

Other potential reactions

• Liver damage - symptoms include yellowing of the skin/eyes, dark brown coloured urine, pain or swelling in the upper right side of the abdomen, joint pain, skin rashes or fever.
• Low blood counts - symptoms include persistent fever, bleeding or bruising more easily or small red/ purple spots caused by bleeding under the skin.
• Nerve disease - symptoms include changes in vision, weakness in your arms or legs, numbness or tingling in any part of your body.

If you experience any of the above adverse effects, please seek medical attention.

Follow-up investigations

You should expect blood tests throughout treatment (usually every 4-8 weeks) and you may receive a Magnetic Resonance Imaging (MRI) scan every three to six months (frequency to be determined by your clinician).

Pregnancy and Fertility

Pregnancy must be excluded before initiating treatment. If you are breastfeeding, please inform your doctor.

Highly effective contraception should be used during treatment and for 6 months after. For details on what contraceptives are classed as ‘highly effective’ please speak to your doctor or pharmacist.

Driving and use of Heavy Machinery

Infliximab may have a minor effect on your ability to drive or use machinery, dizziness may occur after each infusion so caution must be taken.

Alcohol

There is no reason to avoid alcohol during infliximab treatment. Ensure consumption is in moderation and within recommended guidelines (see NHS drink less for more information).

Operations and Dental Procedures

Depending on the type of surgery, infliximab may be stopped before and for time after surgery. This is because there is an increased risk of infection after surgery.  The duration infliximab is held will be determined by your doctor.

Before dental procedures, please inform your doctor or dentist that you have received or are receiving treatment with infliximab. Ensure you take your patient alert card with you and show your dentist.

Vaccinations

It is not recommended to get live vaccines (rotavirus, MMR, influenza, shingles, chickenpox, BCG, typhoid, yellow fever) 4 weeks before and during infliximab treatment.

COVID vaccines are not live so they can be administered during treatment.

If you were pregnant or breastfeeding whilst receiving infliximab, inform your child’s doctor as they may be at increased risk of infection. It may be necessary for your child to avoid live vaccines for a certain period. 

Interactions with other medicines

Infliximab does not routinely interact with medication. Please speak to your doctor or pharmacist if you have any concerns.

If there is anything you are concerned about that is not mentioned in this leaflet, please contact your doctor.