PARENT INFORMATION SHEET PAMIDRONATE TREATMENT Pamidronate treatment has been recommended by the Oxford Paediatric Rheumatology Team because your child has a condition causing thin bones, fractures or bone pain or has thinning of the bones from a prolonged course of steroids. Pamidronate Pamidronate belongs to a family of drugs called Bisphosphonates that reduce bone turnover. Bone turnover occurs in all of us and is the process of breaking down and rebuilding bone. By reducing the rate of bone loss in thin or inflamed bones, bisphosphonates increase bone strength; reduce fractures and bone pain; and improve mobility. Pamidronate is known to stay bound to the bones for many years. Procedure Pamidronate is given by a drip (infusion) over 4 hours daily for 3 days, without having to stay in hospital overnight. In patients with osteoporosis or osteogenesis imperfecta this is repeated every 2-3 months. In patients with chronic recurrent multifocal osteomyelitis (CRMO) or hypercalcaemia a single course of treatment is given. It is normally given at the Children’s Hospital (John Radcliffe). Your child can eat and drink normally before coming to the hospital to have the infusion and whilst they are on the ward. After arrival in the ward, the doctor will insert a very small plastic tube (called a cannula) into your child’s arm, or the back of their hand. EMLA cream may be applied to numb the skin. The cannula will be used to take a small blood sample at the beginning of the test and to give the infusion of pamidronate. Hopefully we will be able to give all three infusions through the same cannula over the three days. Some children stay in hospital for the whole 3 days but most prefer to go home overnight between the infusions. If you choose to go home we will bandage the cannula securely so that we can keep using it for all the 3 infusions. Side effects Like all medicines Pamidronate may cause some side effects. If any occur they are usually mild and short-lived. The most common side effects are: Flu-like symptoms – with aches and pains, a high temperature, headache, nausea and vomiting. Paracetamol is often helpful but ibuprofen shouldn’t be given as this interferes with the way the pamidronate works. It is rare for flu-like symptoms to occur after the first course of pamidronate and subsequent courses of treatment should go ahead as planned. OxPARC Team, March 2011 Review date March 2013 Low calcium levels (hypocalcaemia) can occur during the infusions. This is more likely if your child is deficient in vitamin D or already has reduced calcium levels in the blood and we will check this before we plan the first cycle. Your child may be prescribed vitamin D beforehand and we will monitor the calcium level in your child’s blood during the infusions. Calcium tablets or solution are given if there are low levels. Affects on an unborn baby Pamidronate does not affect the ability to become pregnant but must not be given during pregnancy as the effects on an unborn baby are not known. In addition caution should be taken after infusions because pamidronate stays in bones for long periods and may be released during a normal pregnancy. Whether this affects the baby is not known for sure, but to date babies born somewhile after infusions have been healthy and normal. Monitoring Pamidronate We monitor the response of thin bones by a DEXA scan every year to assess whether pamidronate treatment is still necessary. Treatment is stopped once the bone strength is normal, otherwise fractures may be slower to heal. Experience has shown that pamidronate produces an excellent result whilst rarely causing problems and none serious. However, it is a relatively new drug and information on long term side effects isn’t available. The known side-effects will have been discussed with you by the Paediatric Rheumatology team in clinic before you decide to start treatment. The Paediatric Rheumatology Team will review your child regularly in the clinic and will be happy to answer any questions you have about the treatment. If you are worried or need some advice about the medication then you can contact us via the helpline 01865-737656: a) b) Paediatric Rheumatology Consultants: Dr Nick Wilkinson & Dr Joel David contactable via Hannah on 01865 738049. Paediatric Rheumatology Specialist Nurses: Elaine Parsons, Eunice Kendall & Emma Inness 01865 737656. OxPARC Team, March 2011 Review date March 2013