Thursday, October 22, 2009

A plan.

We took a trip to Children's today with Bean.

Bean has been on Naproxen(Alieve):
Nonsteroidal anti-inflammatory drugs (NSAIDs) — These medicines provide pain relief and reduce swelling. Some are available over the counter and others require a prescription. Examples include ibuprofen and naproxen. These medicines can cause nausea and stomach upset in some people and need to be taken with food.
She has also - for the past two weeks been on oral Prednisone:
Corticosteroids (steroids) — In patients with oligoarthritis or in patients with very painful/swollen joints with other types of JIA, these medications are very effective when given as an injection (shot) into the affected joint. In younger children or if several joints are injected, sedation is often used. In patients with more severe widespread disease, these medications occasionally need to be given by mouth as a pill. These medicines when given by mouth are effective, but can have serious side effects—including weakened bones —especially when used for long periods. Doctors generally try to avoid using steroids in children because they can interfere with a child’s normal growth.

Obviously this was a stop gap measure - we needed a plan.

Dr. H laid out three options - this is the information as I remember it....with some internet based research in between...

1. Methotrexate - a disease modifying drug - has 20 years of research.
20 % of children get side effects - stomach/abdominal pain 12-24 hours after taking the medicine, mouth ulcers -- some say hair thinning/loss.
Suppresses production of blood cells.
Need to take folic acid.
Long term possible liver injury.
Need Serial blood testing to check on liver - first every month...hopefully every 2 months after that.
2 ways to administer - oral (pill) or injectable - once a week.
Effective in 30-40% of SJIR kids

Disease-modifying anti-rheumatic drugs (DMARDs) — These medications work by changing, or modifying, the actual disease process in arthritis. The aim of DMARDs is to prevent bone and joint destruction by suppressing the immune system’s attack on the joints. Methotrexate is the DMARD most often used to treat JIA. Other medications used include sulfasalazine and leflunomide.

2. Enbrel - biological modifying drug - has 10 years of research.
It works by blocking the protein molecule TNF and its function (a marker in SJIA patients)
Side effects include decrease in immune system - especially fighting tuberculosis
Administered by injection once a week
Effective in 50% of SJIR kids

3. Kineret - a newer biological modifying drug - it is newer.
It works on blocking the protein molecule IL1
Side effects include decreased in immune system -- especially for severe infections like bacterial infection, pneumonia, sinusitis
Administered by injection daily...though it burns at the injection site
Effective in 80-90% of SJIR kids

Biological modifying agents — Biological agents are medications that directly target molecules or proteins in the immune system responsible for causing the inflammation. They are used to treat children with more severe arthritis that is not responsive to other medications and are given by injection or by infusion. Etanercept (Enbrel), infliximab (Remicade), adalimumab (Humira) and anakinra (Kineret) are examples of this type of medication.

Also - one we know but didn't talk about yet:
Physical and occupational therapy - Exercise, physical and occupational therapy can help reduce pain, maintain muscle tone, improve mobility (ability to move) and prevent permanent handicaps. In some cases, splints or braces also may be used to help protect the joints as the child grows. Special accommodations with schools may be needed to adjust for children with limitations from their arthritis. The Americans with Disabilities Act (“504” plan) can help facilitate these issues.

After much discussion....we chose the first. Methotrexate.
It is the one that is least invasive and the most tested...when there are no good decision...ya have to pick the lesser of the evils.

Bean gets her first dose tomorrow night.

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