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Updated February 2023
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.
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.
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.
It is usually taken twice a day.
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.
People may stay on mycophenolate for longer periods (several years) to help keep their disease under control.
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
Headache, dizziness, sleeping problems
Mood changes
Skin rash / sun sensitivity
Mouth ulcers Sore gums Sore throat
Rare side effects
Disturbance in blood counts (change in blood test results)
Upset liver function
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:
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.