Treatments & Tips

Non Steroidal Anti-inflammatory Drugs (or NSAIDS)
This group of medication helps reduce swelling, ease stiffness and offers pain relief. It includes drugs such as Ibuprofen, Diclofenac (Votarol), Naproxen (Naprosyn) and Piroxicam (Feldene).

Paracetamol
This is given for mild to moderate pain and to help reduce a fever but doesn’t help reduce inflammation. It is often used alongside NSAIDS.

Steroids are powerful anti-inflammatory drugs. They can be given as an infusion (Methylprednisolone), orally (Prednisolone) or by injection (Triamcinolone hexacetonide) into a joint. Several joints can be injected at one time and is usually done under a general anaesthetic or with Entonox (gas & air). Joint injections can be repeated if necessary.

Steroids work by blocking some chemical messages involved in the inflammatory process and therefore work quickly and effectively to reduce inflammation. However, they are not without side effects. For most the benefits of taking steroids usually outweigh the side-effects and if taken for short periods of time there are usually no side effects. Weight gain, mood swings, acne and excess hair growth are the more common side effects with longer courses. It is important to note that these effects settle when the medication is stopped – but you should never stop steroids abruptly, always seek medical advice.

This type of drug reduces activity in the immune system which may be overactive. The one most commonly used in JIA is Methotrexate. It is slow acting and the benefits may not be seen for several months. It can be given by tablet or injection.

Regular blood tests are done as this drug can occasionally affect liver and bone marrow function. Methotrexate is sometimes given in combination with the vitamin folic acid as this may help to reduce side effects.

The immune system produces chemicals to help fight infection. In children with JIA too many chemicals are released causing inflammation. One of these is a protein called tumour necrosis factor (TNF) and some biologics work by blocking TNF with a dramatic reduction in inflammation. Other biologics act on other parts of the immune system.

Adalimumab, Etanercept, Infliximab, Enbrel & Humira
Adalimumab, Etanercept & Infliximab are biologics which block TNF. Anakinra, Abatacept, Tocilizimab and Rituximab are some of the other biologics used. This group can be used either short or long term and is always administered by injection. Frequency varies from daily to fortnightly and in some cases is given by intravenous infusion. The Biologics can cause side effects which may include infection, local injection site reactions, allergic reactions, feeling and being sick, diarrhoea and rashes. They may also be painful and may very rarely cause long-term problems with white blood cells.

This is done regularly for both Methotrexate and the Biologics to monitor the body’s white blood cell count. If this becomes suppressed it reduces the body’s ability to fight infection. Blood Monitoring will also check that the drugs are not making the liver work too hard.

If your child has uveitis which doesn’t settle quickly on eye drops the doctors will suggest methotrexate and possibly some of the biologic drugs described above as we now know that they can be very effective at controlling the eye inflammation as well as the arthritis.

Methotrexate & Injections
When and how to take?What are the possible side effects?Blood monitoringSubcutaneous injectionsTravel AdvicePregnancyMethotrexate Injections

Methotrexate is a well-established and effective treatment for a range of rheumatic diseases. Methotrexate is known as a disease-modifying anti-rheumatic drug (DMARD) which dampens down the inflammation in the joints and reduces the activity of your child’s immune system.

 

When and how to take?
Methotrexate may be taken in tablet or liquid form but is also frequently administered as a subcutaneous injection. Injection may be a more appropriate method of administration of methotrexate even at the onset of JIA. Your rheumatology team will advise you about the most suitable preparation for your child.

Methotrexate should be taken once a week on the same day whether in the form of a tablet, liquid or injection. If a dose is missed or forgotten, then it can be given within 48 hours of the usual day. If the dose is more than 48 hours, please contact your rheumatology nurse for advice. Tablets should not be crushed.

Methotrexate subcutaneous injection may be used for several reasons e.g. when oral medication is poorly absorbed or tolerated and therefore does not work as well as it should. In some children the use methotrexate injections offers the best chance of getting their disease under control. It is important to remember that it may take up to 12 weeks before Methotrexate starts to work.

 

What are the possible side effects?
Most children and young people manage to take methotrexate without any side effects. The most commonly reported problems are tummy upsets and tiredness the day after taking the medication. Side effects may be lessened by taking folic acid the day after the dose of methotrexate, but unlike in adults this is not routinely prescribed in kids from the outset of treatment. Please contact your rheumatology nurse if your child has on-going problems taking their methotrexate.

The following side effects are very rare but you should contact your doctor or rheumatology nurse immediately if your child develops any of the following symptoms: unexplained rash or bruising, fever, sore throat, mouth ulcers, chicken pox or anything else that may concern you. It is also advised that your child should not be given any live vaccines.

 

Blood Monitoring
Methotrexate affects the immune system and it is also important to make sure the medication is working properly. Bloods must be checked either at your G.P surgery or local hospital prior to starting Methotrexate and if levels are normal ongoing monitoring will be between 4 -12 weeks. It is useful to keep a diary of all blood monitoring appointments. Your consultant or nurse will advise of the intervals in between blood tests. Do not miss appointments, and if so contact your rheumatology nurse.

 

Subcutaneous injections
No one really likes injections but it is important to ask yourself whether your child understands what is involved in their injection. From a young age it is important to encourage your child to become familiar with their treatment and to understand what it does and how it helps them. Parents know their child best so use information appropriate to their level of understanding. If parents adopt a positive attitude and are encouraging it can make a lot of difference. If your child is very anxious around getting their injection then distraction techniques can be useful as this can take your child’s mind off the procedure and fear associated with the injection. Any activity that takes their mind off the procedure is worth trying, such as, deep breathing, reading a book, singing songs, or watching a video. It can also be helpful to agree and activity after injection. You might have to try various things to find out what works best for your child. Your rheumatology team will be able to help you with any problems around injections & anxiety so please ask if you need help. If you going to be giving your child injections then you will be shown in detail the process around preparing equipment, syringes used and disposal by the nurse in order for you to administer Methotrexate safely and effectively at home.

NOTE: In the event of a spillage of Methotrexate always wash your hands thoroughly after dealing with a spillage and if further advice is required contact your rheumatology team.

 

Travel Advice
Storage of methotrexate will vary according to local policy and manufacturer’s guidelines. Caution should be taken when in hot climates though, discuss with the rheumatology nurse, consultant or pharmacist. If flying, oral liquid and methotrexate injections should be held in hand luggage, separate sundries such as spare needles, sharps boxes cotton wool etc can be stored in check-in luggage. Due to heightened security measures at airports it is recommended you inform your travel company that you will be travelling with methotrexate and to get a supporting letter from your G.P or rheumatology department.

Other options to consider include taking tablets instead of injections or injection given just before going on holiday and then as soon as you return from holiday. Again discuss this first with your rheumatology nurse. If vaccinations are required for travel abroad see your practice nurse or G.P in good time before travel, however your child should not be given any LIVE vaccines.

If your child becomes unwell with diarrhoea and/or vomiting while on holiday, withhold methotrexate and seek medical advice.

 

Pregnancy
It important that mothers who are pregnant, trying to conceive or breast feeding are informed by consultant or nurse of the potential risks of handling Methotrexate due to its effects on the unborn child. Although there is little evidence regarding this and it is personal choice, best practice advocates parents should not administer Methotrexate in these circumstances. Young adults who are sexually active should use effective contraception as Methotrexate can harm a developing baby. If planning a pregnancy Methotrexate must be discontinued for at least 3 months before and if a young person discovers that they are pregnant they should seek urgent advice from their nurse, G.P or local health clinic.

 

Please remember that if your rheumatology team are available to help you with any problems or issues you or your child may have with taking medications so please don’t be afraid to ask.

 

Methotrexate Injections
Information on methotrexate is available on the iCAN site and if giving your child injections you will have received detailed instruction from your rheumatology team. However, here are a few reminders before administering subcutaneous Methotrexate injections;

• Ensure it is the correct dose and within the expiry date.
• Choose a clean area which has a flat surface.
• Wear disposable gloves (children who administer their own medication do not require gloves)
• Choose a different injection site each week, common used sites are the upper outer quadrant of the thigh, alternate leg used each week.
• Give at a 90 degree, ensuring the needle is fully inserted before administering Methotrexate
• Dispose of sharps in a cytotoxic sharps bin.
• In the event of a spillage (of either oral liquid or injection solution) always use disposable gloves.
• NOTE: In the event of a spillage of Methotrexate always wash your hands thoroughly after dealing with a spillage and if further advice is required contact your rheumatology team.
• Spillage on work surfaces or floor: Blot the spillage with absorbent paper, wash the area thoroughly with soap and water, dispose of paper/cloths in the cytotoxic sharps bin and close over
• Spillage on skin: Do not scrub the skin, Wash with plenty of soap and water, dry thoroughly
• Spillage on clothing: Blot dry, Remove clothing and wash separately from other clothing
• Spillage in Eyes: Wash your eye(s) with copious amount of water for at least 5 minutes, Seek medical advice

Physiotherapy
Aims of Physiotherapy:

• Reduce pain
• Reduce inflammation
• Preserve joint function and prevent deformities
• Strengthen muscles
• Maintain normal growth and development
• Encourage active participation in activities
  – Colette Lynch Physiotherapist CUH

Occupational Therapy

OT can help children with physical, social, emotional, cognitive and behavioural challenges. Your OT will try to understand the impact of the impairment on their development, design treatment to promote health development, establish needed skills and modify their environment. OT can help with school, splinting, assistive devices and energy conservation.

– Megan Goodale Occupational Therapy Manager CUH

Swimming and Hydrotherapy
All water activity is very important if you have JIA. Swimming is a great form of exercise and your Physiotherapist can help you by devising a programme for you to do in water.

Heat Therapy
When your child’s joints are stiff and sore especially first thing in the morning applying heat packs is very benefical and soothing.

Cool Therapy
Cool Therapy is best used at the onset of a flare to reduce swelling also useful after activity.
As with any treatment consult your child’s doctor before experimenting with any of the above .

Medication tips for parents
Giving children medication and getting them to take it can be extremely difficult, thus it is important that children are included and have a say in their treatment. For parents, the focus is often on getting their child to take medication as and when it is prescribed. To achieve this it is invaluable to work with your child.

If children feel they are being included and taken seriously, and that their views and opinions matter, they are much more likely to take their medication than if they are simply told what to do. With this approach some older children are happy to take ownership of their treatment to the point of administering their own injections.

 

TAKING TABLETS
For some children, and even adults, this can be extremely traumatic. It is often worse with drugs such as methotrexate that your child may associate with nausea and tummy upsets. If there are problems you may wish to:

• Try talking to your child and finding fun ways to make it easier.
• Try flavoured water/drinks to wash medication down.
• Try thicker liquids such as fruit smoothies, yoghurts or milkshakes.
• Try some liquid in the mouth first and then pop the tablet in.
• Try giving with sweet foods such as honey or jam as this may mask the unpleasant taste.
• When giving medication it is important to remember to be understanding and use a gentle but firm approach;
• Try to remain calm if your child refuses to take their medication, take a break and come back to it in 10 or 15 minutes.
• Try and get someone else to try if you are not managing, perhaps your partner.
• If your child takes a number of tablets then try splitting them up with a gap between tablets.
• Giving your child choices lets them know that they have some control and ownership over their treatment yet still lets them know it is something they have to do. For example saying “Do you want your tablet before or after dinner?” rather than “do you want juice or water with your tablet?”

 

INJECTIONS
Be it a blood test or injection of medication, no child likes needs. The sting felt with an injection can be particularly severe with some medications such as Humira. However, with a practical approach, most children are able to cope with the frequent injections often needed to treat JIA – and some children and teens even go on to self-inject. (See video of iCAN hero Ciaran) Below are a few tips our iCAN members recommend for helping to make injections that bit easier on your child:

• Consider a reward system. A small prize or star chart for each injection, which accumulates to a larger prize over time.
• Particularly strong sour sweets, when consumed just as the shot is being taken, can confuse the body into not feeling as much pain at the injection site
• Use numbing creams or sprays – ask you Rheumatology team to recommend or prescribe what they think might work best for your child
• Buzzy for Shots is very popular for iCAN members
• Have your child cough just as the needle goes in – again this confuses the nerve response and can help lessen the pain
• Fun plasters
• Sing a short song while the shot goes in, helps to keep the mind off the injection
• A can-do attitude, lots of praise and keeping things positive (even if you don’t really feel it yourself) can help your child be brave

 

These are just a few tips – there are no doubt man more tips other parents have learned and you may have some of your own. There may be times when these tips just don’t work, but don’t give up! iCAN has a Facebook page and a private forum to discuss tips with other parents who are in the same position as you. If you would like to joing our private forum, please send an email to icanireland@gmail.com.

iCAN Parent Reps
Not that into social media? There is always your iCAN Local Parent Rep who can be contacted if you just need to talk things through, please get in touch. Details of the Local Parent Reps can be found on our contact page.