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Intravenous immunoglobulin and you Patient information What is intravenous immunoglobulin? Your doctor will have told you that you need to be given a medicine called intravenous immunoglobulin to help you recover from your illness. Intravenous immunoglobulin, or IVIG for short, may sound daunting, but don’t worry. It’s simply a medicine containing a mixture of antibodies purified from plasma supplied by blood or plasma donors. Intravenous means that it goes directly into your veins, whilst immunoglobulin is another word for antibody. You may already know that antibodies help your body fight infection. So intravenous immunoglobulin is a medicine that is injected into your veins, either to help you fight infection or to help your immune system work properly, depending on your illness. 2 Who needs intravenous immunoglobulin? Intravenous immunoglobulin has been used to treat all sorts of illnesses for the last 20 years, and new uses are being found all the time. A number of conditions commonly treated with intravenous immunoglobulin include: • Primary antibody deficiency – PAD An inherited condition which results in a partial or complete lack of antibodies • Secondary antibody deficiency A condition caused by a previous or ongoing illness which results in a partial or complete lack of antibodies • Immune Thrombocytopenic Purpura – ITP A shortage of the blood platelets which help your body heal cuts and abrasions • Kawasaki disease A possibly infectious inflammation of the blood vessels in children • Guillain-Barré Syndrome – GBS A short-term (‘acute’) inflammation of the nerves that control your arms and legs Intravenous immunoglobulin and you 3 How does intravenous immunoglobulin work? Primary antibody deficiency Primary antibody deficiency, or PAD for short, is a genetic disorder which results in either a shortage, or total lack, of antibodies. This means that your body cannot fight infection as well as it should. By taking intravenous immunoglobulin, you can boost the amount of antibodies in your circulation to a level that can fight infection successfully. This level of antibodies needs to be topped-up every so often using intravenous immunoglobulin to keep this protection going. 4 Secondary antibody deficiency Secondary antibody deficiency is a shortage, or total lack, of antibodies as a result of the effects of another illness. So this condition is not inherited but is an acquired condition. The effects though are the same as in PAD, that is, your body cannot fight infection as well as it should. Again, intravenous immunoglobulin is needed to boost antibody levels so that they can fight infection effectively. Regular doses of intravenous immunoglobulin are needed to keep these antibody levels high enough to fight infection. In addition, you will need other treatments for the illness which has led to the low levels of antibodies. Two examples of conditions that can lead to Secondary Antibody Deficiency are given below. Chronic Lymphocytic Leukaemia Chronic Lymphocytic Leukaemia, or CLL for short, is a condition which causes the cells which make antibodies (called B-cells) to not work properly. This means that the body does not make enough antibodies to fight infection. Multiple Myeloma This is another condition which causes the B-cells to not work properly. As with Chronic Lymphocytic Leukaemia, the body does not make enough antibodies to fight infection. Intravenous immunoglobulin and you 5 Immune Thrombocytopenic Purpura Immune Thrombocytopenic Purpura, or ITP for short, is a condition which results in a shortage of platelets, which help your body heal cuts and wounds. Intravenous immunoglobulin can block the normal breakdown of platelets in your spleen, slowing down their destruction. So, your platelet count can rise and bleeding is controlled. Repeated doses of intravenous immunoglobulin are needed to maintain this effect and to keep platelet levels up. 6 Intravenous immunoglobulin and you Kawasaki disease Kawasaki disease is thought to be an infectious disease (though this is not yet proven), mainly appearing in children. This disease results in inflammation of the blood vessels and other tissues, such as heart muscle. Although intravenous immunoglobulin is known to be very effective in treating Kawasaki disease, the way that it works is not yet known. Aspirin also needs to be given as part of the treatment. 7 Guillain-Barré Syndrome Guillain-Barré Syndrome (GBS) can affect patients of all ages and, in the UK, about 1,500 people are diagnosed as having the disease each year. GBS is a short-term (‘acute’) inflammation of the nerves that control your arms and legs. The exact cause of GBS is not fully understood. It has been noticed that patients have often suffered from an infection of the throat or intestine in the weeks before being diagnosed as having GBS. Sometimes, GBS has been known to follow a period of great stress. For this reason, it is thought that GBS may have its root cause in the immune system. High doses of intravenous immunoglobulin aid clinical improvement in many patients. The mechanism of action in GBS is unknown. 8 Intravenous immunoglobulin preparations There are many different preparations available for treatment, some manufactured in the UK, others manufactured abroad. Whichever preparation is used, they are all essentially the same; antibodies purified from plasma supplied by blood or plasma donors. The amount of intravenous immunoglobulin in each bottle is measured in grams, and the amount needed for successful treatment is expressed in grams/kg. Once your doctor or nurse has worked out how much you need, the intravenous immunoglobulin will be given to you through a drip into your arm. This will either happen at the hospital, or in certain circumstances, you will be shown how to do it yourself at home. Intravenous immunoglobulin and you 9 Don’t worry, you’re not alone! Useful addresses: The ITP Support Association Synehurste, Kimbolton Road Bolnhurst, Bedfordshire MK44 2EW E-mail: [email protected] Website: http://www.itpsupport.org.uk International Patient Organisation for Primary Immunodeficiencies (IPOPI) Firside Main Road, Downderry, Cornwall PL11 3LE Tel: 01503 250668 Email: [email protected] Website: www.ipopi.org Kawasaki Support Group 13 Norwood Grove, Potters Green, Coventry CV2 2FR Helpline: 02476 612178 Email: [email protected] Website: www.kssg.org.uk Leukaemia & Lymphoma Research 39-40 Eagle Street, London WC1R 4TH Tel: 0207 405 0101 E-mail: [email protected] Website: http://leukaemialymphomaresearch.org.uk Guillain-Barré Syndrome Support Group Ground Floor, Woodholme House, Heckington Business Park Station Road, Heckington, Sleaford NG34 9JH Helpline: 0800 374803 E-mail: [email protected] Website: http://www.gbs.org.uk 10 Intravenous immunoglobulin and you If in doubt... ...ask! Remember – if you have any questions or concerns about IVIG therapy, always ask your GP or Consultant who will be able to set your mind at ease. Your consultant is: .................................................... .................................................... Contact phone number: .................................................... 11 A Patient Information Service from: Bio Products Laboratory Ltd, Dagger Lane, Elstree, Hertfordshire, WD6 3BX, United Kingdom Tel: +44 (0)20 8957 2342 / 2622 Fax: +44 (0)20 8957 2611 Email: [email protected] www.bpl.co.uk BPL is a registered trade mark of Bio Products Laboratory Ltd ® UK/Gx/0112/0001 Date of preparation: January 2012