And the fever returns...and the pain.

Did I speak to soon? At 3am Bean walked into our room...with 103.2 fever, back pain and knee pain. Is it related - is it something different?

Here is my e-mail to Dr. H.

Dear Dr. H,

Thank you for the e-mail and the follow up. The week went well. She started the naproxen on Monday - 2x per day. And here week went well.

Friday she had her 3rd dose of methotrexate and we dropped her dose of prednisone down to 20mg 1x day - from 25mg 1x day (as it had been 2 weeks).

10mg of methotrexate x1 per week
20mg of prednisone x1 per day
15 mg of prevacid x1 per day
1mg Folic Acid - x1 per day
250mg naproxen - x2 per day

Early this morning (Sunday morning) - 3am - Adina came into our room - saying her back hurt, and knees hurt. I picked her up as she couldn't climb into the bed and I realized she was quite hot. She had 103.2 fever. We realized that for the first time, she hadn't had her medicine before she fell asleep - we gave her the medicine and she went back to sleep.

I'm not sure if it was a coincidence that she got the fever and hadn't had her medicine - one dose.
If this is an unrelated illness...
What this back pain is about - lower back pain.

You had asked about the rash in your last e-mail. I'm not really sure if it has come back. It is SO hard to tell as her cheeks are often red from the steroids. And the phantom rash comes and goes so quickly. There have been a few times I think I have seen it, but I can't be 100% sure.

What are your thoughts?

Thanks so much,
L

Dose 3

Friday night Bean got her third dose of methotrexate. Again she didn't have any rection...I have to say handing my daughter 12 pills brings me to tears...it is too much.

But she didn't have any reaction. Life is good.

The Dr's Response...

Dear Mrs. S,

Thank you for the update.

Her numbers from the last bloodwork looked good (sorry, I thought you were called about them).

Specifically, her hemoglobin has improved from 9.9 to 12.0 (anemia has resolved), plt decreased from 580 to 436 (good), ESR went from 103 (extremely elevated) to 20 (normal), CRP went from 9.9 (very high) to 0.06 (very normal, normal < 1.0). The ESR and CRP are the best markers for inflammation, and they are normal now, this is very positive. Kidney, liver and muscle-related enzymes are all normal. Tests for Epstein-Barr and Cytomegalovirus were negative. These test results corroborate the impression from the last visit that her disease process was entirely controlled.

The symptoms you are describing (pain in legs, back and head) are unlikely to be symptoms of any of the medications in particular. Lethargy/feeling unwell is sometimes seen after methotrexate but I would expect it to occur immediately but not with a delay of 24-48 hrs.

Why do you think she has trouble sleeping? Is it because of pain? Or is it because of agitation? Sleep problems can occur with corticosteroids but I was hoping for this to improve with once daily dosing in the morning.

I agree with continuing the naproxen twice daily for now while she has these symptoms. Did she have any recurrence of fevers or rash? While we taper corticosteroids, a recurrence of her s-JIA is also always a consideration but I would think this is somewhat unlikely given that we have not tapered very much. I would suggest for the time being to continue with the current treatment plan. If these symptoms should persist or worsen, or if fevers/rash should recur, I would like to see her back in clinic earlier than the planned four weeks. I would also consider to get repeat blood tests earlier rather than in four weeks, so we can pick up any early signs of inflammation.

C H

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.