Mycophenolate

Updated February 2023

What is mycophenolate?

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Mycophenolate is usually a medication used to treat certain childhood rheumatic conditions (diseases which may affect kidneys, joints, muscles, skin, gut or eyes). This can include lupus (also known as SLE), uveitis and scleroderma. It is also used in patients who have had transplants.

Mycophenolate is a medication that works by suppressing your immune system. It reduces the damage done by inflammation, rather than just reducing pain.
 

Important things to remember

  • You must see your rheumatologist regularly to make sure the treatment is working and check for possible side effects.
  • You should have regular blood tests as suggested by your rheumatologist.
  • If you are worried about any side effects, you should contact your rheumatologist as soon as possible.
  • If you stop mycophenolate for any reason, you must contact your rheumatologist.
     

How will it help?

Mycophenolate is a medication that works slowly. You can expect your child to gradually start feeling better, but it might take one to three months.

How is mycophenolate given?

Mycophenolate is given as a tablet or oral liquid. Mycophenolate mofetil and mycophenolate sodium are given at slightly different doses and caution must be taken when switching from one to another.

When should it be given?

It is usually taken twice a day.

What is the dose?

This depends on the weight of your child. It is usually started at a low dose, which is then increased. The final dose is adjusted according to response and side effects.

How long will it be used for?

People may stay on mycophenolate for longer periods (several years) to help keep their disease under control.

Are there any side effects?

Mycophenolate is usually effective, however as with all medications, side effects can occur. Some are common, and some are rare. Most people don’t have any problems when they take mycophenolate. Regular blood tests are important to monitor side effects.

Most common side effects

Treatment

Nausea (feeling sick) vomiting, loss of appetite & diarrhoea

  • Dose alteration
  • Take dose with food
  • Anti-emetics (anti-sickness medication)

Headache, dizziness, sleeping problems

Mood changes

  • Notify your doctor

Skin rash / sun sensitivity

  • Use high factor sunscreen and hats

Mouth ulcers Sore gums Sore throat

  • Dose reduction; tell your child’s doctor

 

Rare side effects

Treatment

Disturbance in blood counts (change in blood test results)

Upset liver function

  • Usually returns to normal if mycophenolate dose is reduced or stopped


 

Things you need to know when your child is taking this medication

What to do if your child is sick
It is safe to give mycophenolate if your child has a mild cold or cough. Don’t give mycophenolate if your child:

  • Has a high fever
  • Has had vomiting/diarrhoea  
  • Has been in contact with chickenpox, shingles or herpes zoster
  • Is sick and you’re not sure why.

If you’re not sure, talk to your doctor and get them checked if necessary before giving mycophenolate.
 

Interactions
Mycophenolate can be taken with other medications. This includes prescription medications, natural medications and medications that you can buy over the counter.
Always discuss any new medication with your doctor before taking it.
 

Immunisations 
Most immunisations are safe to have (flu vaccine, cervical cancer vaccine, killed polio vaccine (IPV) etc) when taking this medication. Live virus vaccines (such as mumps, measles, rubella (MMR), polio (OPV)), varicella (chicken pox) and some live vaccines should not be used.
 

Infections
Patients on mycophenolate are at increased risk of infection, because of immune suppression. Mycophenolate can make chickenpox infections more serious. A blood test can be done to see if your child is already immune to chickenpox. If your child is in contact with chickenpox or shingles, call your doctor.
 

Alcohol
Mycophenolate and alcohol are both broken down by the liver. Drinking alcohol while you are on this medication can put extra strain on the liver. It is not known how much is safe, so it is suggested that anyone on mycophenolate should avoid drinking alcohol.
 

Sexual health and pregnancy 
Being pregnant while on mycophenolate, can be harmful for the baby. Patients who are sexually active, should use effective contraception to avoid getting pregnant. 
Mycophenolate may change how the contraceptive pill works, so other forms of birth control should be considered while on this medication. Having been on mycophenolate in the past does not change a person’s fertility for the future nor does it change their chances of having babies later.
 

Myths and misconceptions
You may hear a lot of different information about mycophenolate from friends, pharmacists or people that you know. If you are worried about anything, please talk to your child’s doctor or nurse for more information. If your child is taking mycophenolate they should see their paediatric rheumatologist regularly to make sure the treatment is working and to minimise any possible side effects.