Mycophenolate Mofetil for Lung Fibrosis

This information leaflet has been written for those patients who will undergo treatment with Mycophenolate Mofetil (MMF). It tells you what it is, how it will be used and what potential side effects there could be.

What is Mycophenolate Mofetil (MMF)?

Mycophenolate is a powerful drug that was originally developed to stop the body rejecting a transplanted organ (i.e. kidney, heart or lung). It acts to suppress the body’s immune system to prevent inlammation.

It has been used by doctors treating conditions other than transplants; including arthritis, eye and now some lung conditions.

Why have I been prescribed this treatment?

You have a lung condition known as pulmonary or lung fibrosis (scarring). This is an illness which causes the lung to become stiffened or scarred over time. This may be due to parts of your immune system being overactive.

You have been offered this treatment to try and slow or stop the lung scarring from worsening. Your doctor will have discussed your case with other doctors who specialise in this condition before recommending this treatment to you.

It is important to realise that this treatment will not reverse or heal the scarring which has already occurred but will hopefully prevent it worsening.

What will happen before I start this treatment?

Before starting this treatment your doctor will check:

• That your blood count, kidney and liver function are normal, this is done by a simple blood test.
• Whether you have had any recent infections.
• That you don’t have any allergies which may stop you having this treatment.
• That you aren’t pregnant or planning to become pregnant or are breast feeding.
• Whether you have had any vaccinations recently.

How will I take this treatment and what dose will it be?

MMF is taken as a tablet. The dose is normally 2 to 3 tablets twice a day, your consultant will advise you about this.

When taking this treatment:

• Always take the tablets as directed.
• Take tablets with food as this can cut down the side effects of nausea and stomach pain.
• Swallow tablets whole, do not suck or chew them.
• Do not worry if you miss a dose. You should take your next dose at the normal time. Do not take double the dose.
• If you take too many tablets, or somebody else accidentally takes your medicine then contact your doctor or the nearest hospital straight away.

What side effects could I have from this treatment?

Every patient is an individual; your experience may be different to other patients receiving this treatment.

Possible side effects can include: –

• Fatigue – This can happen when starting the treatment but should wear off after time.
• Stomach upset – MMF can cause stomach upset including nausea, diarrhoea, abdominal pain and bloating. These may be improved by taking the medication with food.
• Increased risk of infection – MMF can affect the white cells in your blood stream. This may make you more prone to picking up infections. If you feel unwell or are worried that you are developing an infection then we ask you to contact your GP or consultant.
• Bruising and bleeding – This treatment can cause a fall in the level of platelets in your blood. This may cause you to be more prone to bruising. If you notice any signs of unusual or new bruising you should tell your doctor.
• Skin cancers – There is an increased risk of developing some forms of skin cancer when taking MMF. When taking this treatment you should limit your exposure to sunlight and use high factor protection sun cream.
• Other cancers – There is a very small increased risk of lymphoma (cancer of the lymph glands) although this is very rare.
• Other side effects – These can include headaches, high blood pressure, liver inflammation and deterioration in kidney function.

Although the list of potential side effects does look long and rather frightening, it is important to remember that most patients manage to take this treatment with no, or only minor side effects.

Will I need more tests while I am taking this treatment?

Your Consultant will explain then treatment fully before you start. You will be asked to note and report any side effects that happen while you are taking this.

You will have regular blood tests consisting of:

• Full blood count, kidney function and liver function tests every 2 weeks until you reach the dose that your consultant wishes to be your long term or stable dose.
• Providing these blood tests are normal you will have a regular blood test every 3 months to ensure that your body is coping with the treatment.

You will also be seen regularly in the clinic to review your progress.

How long will I be taking this treatment?

Every patient is different but we would expect you to take the treatment for at least 6 months.

If you wish to stop then you should talk to either your GP or chest consultant before doing so.

Can this treatment react with my other tablets?

Yes it can react with a number of different medications. Your consultant will review all of your medication to ensure that there aren’t any potential problems.

It is important that you also tell your consultant of any herbal or over the counter medications you are taking in addition.

The following medicines are important to know about whilst taking MMF:

• Antacids, iron tablets and the lipid-regulating drug cholestyramine.
• Antiepileptic drugs (such as phenytoin).
• Clozapine.
• Antiviral drugs, including Aciclovir and Ganciclovir.
• Antibiotics such as metronidazole, norfloxacin and rifampicin.

Can this treatment affect my fertility, pregnancy or breast-feeding?

MMF should not be taken during pregnancy or breast-feeding as it can harm a developing baby and also pass to your child in breast milk.

Contraception: men should use condoms during and for 90 days after finishing treatment. Women should use highly reliable contraception during and for 6 weeks after stopping treatment.

Before pregnancy: women should stop treatment for at least 6 weeks (and me 90 days) before trying to become pregnant. Female partners of men undergoing treatment should use contraception for 90 days after their partner stops treatment.

If you or your partner become pregnant you must contact your GP and your consultant.

Should this treatment be stopped for operations?

Yes. If you need to undergo and elective operations you must tell your consultant as they will need to decide how long to stop the treatment for before you can undergo an operation.

Can I take vaccines when I am taking this treatment?

The flu vaccine and the Pneumococcal pneumonia vaccine (Pneumovax) are safe to have while taking this treatment.

Live vaccines should not be given while taking this treatment. These include Polio, Rubella, Smallpox, Yellow fever and the Nasal flu vaccine.

If live vaccines need to be given then MMF will need to be stopped for 6 months before these and until 2 weeks after the vaccination.

Can I drink alcohol while taking this treatment?

Yes, but please drink alcohol in moderation.

You should not receive this treatment while you have an infection. The treatment can be paused until you have recovered. Please let your nurse or doctor know if you develop and infections.

Contact Numbers

University Hospital of North Tees

Lung Health

Telephone: 01642 624 270

Department of Respiratory Medicine

Telephone: 01642 382 899

24 hours a day, 7 days a week.

Emergency Department

Telephone: 01642 382 777

24 hours a day, 7 days a week

Further information is available from:

NHS Choices

Telephone: 111 (when it is less urgent than 999)

Calls to this number are free from landlines and mobile phones or via the website at www.nhs.uk

Comments, concerns, compliments or complaints

Patient Experience Team (PET)

We are continually trying to improve the services we provide. We want to know what we’re doing well or if there’s anything which we can improve, that’s why the Patient Experience Team (PET) is here to help. Our Patient Experience Team is here to try to resolve your concerns as quickly as possible. The office is based on the ground floor at the University Hospital of North Tees if you wish to discuss concerns in person. If you would like to contact or request a copy of our PET leaflet, please contact:

Telephone: 01642 624719

Freephone: 0800 092 0084

Opening hours: Monday to Friday, 9:30am to 4:00pm

Email: [email protected]

Out of hours

Out of hours if you wish to speak to a senior member of Trust staff, please contact the hospital switchboard who will bleep the appropriate person.

Telephone: 01642 617617

Data protection and use of patient information

The Trust has developed Data Protection policies in accordance with Data Protection Legislation (UK General Data Protection Regulations and Data Protection Act 2018) and the Freedom of Information Act 2000. All of our staff respect these policies and confidentiality is adhered to at all times. If you require further information on how we process your information please see our Privacy Notices.

Telephone: 01642 383551

Email: [email protected]

Leaflet feedback

This leaflet has been produced in partnership with patients and carers. All patient leaflets are regularly reviewed, and any suggestions you have as to how it may be improved are extremely valuable. Please write to the Clinical Governance team, North Tees and Hartlepool NHS Foundation Trust, University Hospital of North Tees, TS19 8PE or:

Email: [email protected]