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The context of medicines
The use of a complex variety of medicines, daily exercises and splints together form the key modes of treating juvenile arthritis. In the past decade the use of methotrexate and other disease modifying medicines (DMARDs) have significantly improved the outlook for children and the general management of juvenile arthritis.
However, as specialist regional centres have forged ahead with new treatments, a proportion of children are still treated with a generally more cautious, outdated approach. The way forward is for a "shared-care" arrangement wherein the child alternatively sees the local paediatrician and then the paediatric rheumatologist at a regional centre.
The difference between a traditional rheumatology and paediatric rheumatologist's approach is striking from the families' perspective. The new specialist approach involves early diagnosis and immediate intervention with strong medication in order to gain quick control of the disease process and prevent damage to the joints.
In these instances, there are generally less complications to manage later (such as joint deformities, corrective splinting and social isolation. Where non-specialist approaches are still used, many children are being seen in clinics mainly used by elderly adults with arthritis. Here there may be a generally more cautious approach to prescribing medication including less pain relief and it can take far longer to achieve pharmaceutical control of the disease process. Excellent healthcare professionals work in both settings but the variation in approach, patient/family experience and potentially clinical outcome is under-researched and worrying.
New 2004 government recommendations should improve medication safety. The National Patient Safety Agency (NPSA) welcomed the Department of Health report on its website www.npsa.nhs.uk/
The following list of questions to ask about your medicines comes from the Ask About Medicines website, that also includes a downloadable "Health and Medicines Information Guide and Directory". See: www.askaboutmedicine.org
It is important to understand what your medicines are and what they do and what to look out for. These are the key questions to ask:
n.b Always store medicines in a cool, dry place, out of reach of children. Take old or unused medicines back to the chemist.
This section can only offer general guidance. You must seek specific advice for your child when you sit the healthcare professionals involved in your child's care. Much of the information below is taken from the information sheets and publications published by Arthritis Research Campaign and Arthritis Care. Downloadable information is available from www.arc.org.uk/about_arth/patpubs.asp or from www.arthritiscare.org.uk/aboutarthritis/
Pain Killers(analgesics)
These are the first level of medicines to help children with symptoms of juvenile arthritis. Paracetamol based liquids or tablets may be prescribed (like Calpol) and can offer temporary relief for mild levels of pain. These drugs are sometimes known as analgesics. Stronger ones like Codeine or Tramadol can cause side effects including nausea, vomiting, drowsiness, constipation and in rare circumstances, breathing difficulties.
Anti-inflammatory medication (NSAIDS): The drugs in this group are prescribed by doctors and are often referred to as NSAIDs (non-steroidal anti-inflammatory drugs). They are used for the treatment of pain, stiffness of the joints and soft tissue in inflammatory diseases. They are also used for inflammation, pain and swelling after operations to the bones and joints. Examples of these drugs include Ibuprofen, Naproxen, Piroxicam, Diclofenac, and Indomethacin. Taking these medicines with or after meals can reduce side effects. They can interfere with other drugs and you should avoid administering more than two forms of NSAIDs at the same time.
Some people experience side effects which include constipation, dizziness, confusion, nausea, heartburn, indigestion, rashes and wheeziness and proneness to stomach complications. Rarer side effects are mood disturbance and kidney scarring. If your child has asthma, she should not take these and you should discuss this with your doctor.
Sometimes people will need to be prescribed another medicine to protect their stomach or counteract some stomach related side effects. Losec or Zantac are the most commonly prescribed. There is a new type of NSAIDs called COX-2 inhibitors that should be safer, but these are not tested widely with children.
Corticosteroids (often called steroids)
These medicines are now used sparingly and with regular monitoring but were over-prescribed in the 1960s and 1970s. Steroids help regulate the inflammatory process and immune response. The most common drug used is Prednisolone. Steroids can be administered by mouth using tablets, (usually taken on alternate days to reduce side effects), by injection into a specific joint for local symptom relief, or by infusion pump into a vein in order to dampen down generalised inflammation. Your doctor may prescribe tablets with a special outer coating (enteric coated tablets) that prevent or reduce irritation of the stomach.
Some people experienced mood changes including a benign sense of well-being and boosted appetite. Common side effects include increased weight, facial changes (considered 'balloon-like'), and more downy hair. High doses of steroids can affect blood pressure, diabetes and mood or sleep pattern changes. People on steroids are prone to infection and illness.
Continued use of relatively high doses does reduce the growth of children - but so does the disease process. This is the aspect that upsets children and parents and yet the drugs are important tools to enhance quality of life in childhood. Careful discussion is needed between the child, parents and professionals and progress with each use of steroids should be a jointly agreed.
When taking steroids, remember...
Disease modifying drugs (DMARDs)
DMARDs reduce the disease activity thus reducing pain, swelling and stiffness. They are slow acting, and may take up to three months to become effective in individual children. They are immunosuppressants that suppress the immune system (the body's own defence system which normally defends the body against infections and disease). The children can become more prone to infections like coughs and colds. Drugs in this group include Methotrexate, Cyclosporin, Azathioprine and Cyclophosphamide, all of which need careful monitoring.
These drugs, particularly methotrexate, have revolutionised the care of children with arthritis, for whom they have been used for the last fifteen years. Early control of the disease process prevents significant joint damage and preserves quality of life for kids with arthritis and their families. However, as paediatric rheumatologists gain expertise and confidence using these new drugs their use is becoming more common. Other clinicians, unused to treating children with arthritis remain more wary. Again, open discussion between all parties must happen, and it helps to have the opportunity to talk to other families who have experience of using methotrexate.
Methotrexate has been highly effective in treating arthritis in childhood since the early 1990s. It is also used in far stronger doses to treat children and adults with cancer. It is a form of chemotherapy, hence the regular blood tests to monitor the children.
Methotrexate is a slow-acting DMARD and you may need to take it for three to twelve weeks before noticing any effect. Methotrexate should always be prescribed with folic acid that reduces mouth ulcers and boosts healthy skin. The most common way to take methotrexate is a tablet or liquid dose one hour before breakfast, once a week, on the same day of the week. Taking methotrexate by mouth can lead to feeling of sickness and loss of appetite and so administration by weekly injections are increasingly used from the start. The children have a weekly subcutaneous injection (into the skin rather than deep into the muscle), administered either by a local clinician or by a parent who has been taught how to inject the child safely at home. Children may feel queasy for several hours after taking the dose, or even for a day or so. Some children fare better taking the dose after a meal. Methotrexate does sting more than other similar injections. There may be temporary side effects (such as mild hair loss, skin rashes, and itchy skin) while the child's body gets used to the medicine. Other side effects include a sore mouth or mouth ulcers, diarrhoea and mood changes. Unexplained bruising, cough or shortness of breath should be reported immediately to your doctor. Talk to your doctor about any side effects that worry you. Some young people exhibit sudden mood changes that may be overlooked or dismissed as 'normal teenagers' behaviour, even if the child is far too young for this explanation. Discuss any changes or side effects with your doctor but some clinicians seem unable or unwilling to offer any support or help about mood changes. Talk to other parents about how to help your child and try to reassure your child who may also be disturbed about their changeable feelings.
Sulphasalzine is another slow-acting drug, and improvements may only be noticeable after six to eight weeks. Enteric coating on the tablets can reduce nausea. Some people experience headaches, loss of appetite, skin rashes and abdominal pain. Three-monthly blood tests will be necessary to check the impact of the drug. Sometimes this drug turns urine orange or dark yellow. If your child develops a skin rash, you should stop administering the drug immediately and contact your doctor. Many of these problems will clear up gradually once the drug is stopped or reduced.
Anti-TNF drugs
There is some interesting research into new pathways for drugs to suppress inflammatory disease. The main drugs are Etanercept and Infliximab, which are administered by regular injections. They are only prescribed together with methotrexate, but where methotrexate has not been effective or, its own. These are very expensive drugs and each Health Authority has to provide specific permission for a consultant to prescribe it for each individual child. It can be effective relatively quickly for some people, but not for everyone. Sometimes most benefits are evident in the early months of use. There is only limited experience of use with children in the long term because the, have only recently been licensed for use with children.
The future has promise but in the meantime, you have to concentrate on living with the drugs and therapies available today. Information about arthritis treatment and advice about what you can do to help are the most powerful tools to help keep children happy and as well as possible.
The Arthritis Research Campaign provides information sheets about each of these drugs.
Contact them at:
Copemen House,
St Mary's Court,
St Mary's Gate,
Chesterfield,
Derbyshire S41 7TD
or via their website www.arc.org.uk
Arthritis Care also provides a useful booklet. Contact them at:
Arthritis Care
18 Stephenson Way,
London
NW1 2HD
Telephone: 020 7380 6500 or visit www.arthritiscare.org.uk
Blood tests at four weekly intervals are necessary to monitor the effects of these drugs on your child's bone marrow and fiver function. As with corticosteroids, your child should not have some vaccines such as the rubella or polio vaccine, and any contact with anyone with chicken pox or shingles should be avoided.
Complementary therapies are varied and increasingly sought out for people with long term conditions. A good updated guide, listing practitioners, produced by Dr Foster and The Times newspaper was published as a Body and Soul supplement in The Sunday Times, 11th January 2004. Complementary therapists guide 2004, Part 1: acupuncturists, homeopathists and herbalists.Sunday Times (2004). It is searchable on the Times website: www.timesonline.co.uk/section/0,,10449,00.html#partone