Early, Aggressive Treatment

Early, aggressive treatment is the standard of care for rheumatoid arthritis.  Thirty years ago, the standard was to use NSAIDs, only adding methotrexate or another DMARD after permanent damage had occurred.

We now realize that DMARDS modify the course of the disease.  They slow down progression.  They are supposed to be used as soon as possible so that the least amount of deformity takes place.

Why, then, are children still treated with NSAIDS?  I am fuming!  It took years for my daughter to even get a diagnosis.  When someone finally put a name to her joint pain, NSAIDs and exercise were prescribed.

Initially, that helped.  It wasn’t great, but when things are really bad, any improvement is nice.  For quite some time, though, it hasn’t been enough.  Last summer I expressed concern that my daughter was missing too many activities due to uncontrolled joint pain.  Her rheumatologist listened and blew me off, suggesting that she just needs to exercise more.

News flash:  at some point, the pain has to be controlled to make more vigorous exercises possible.

If one shoulder hurts, the doctor will do an exam, maybe order x-rays, diagnose tendonitis, and give a cortisone shot before sending you to physical therapy.  If one hip hurts, the doctor will do an exam, maybe order imaging, give a cortisone injection, and write a referral to physical therapy.  Same thing if it’s an elbow or a knee.  BUT for some reason, when my daughter has tendonitis and/or bursitis in multiple joints, she does not get expensive imaging (yay) or steroids or PT or a different med ( :( ).  She’s told to exercise and stick with ineffective NSAIDs.  They’ll treat tendonitis in a single joint, but when the problem is due to her immune system gone postal, she’s SOL.

This is affecting her schoolwork and her social life.  Do I give her an F in typing if she is in too much pain to be able to sit at a keyboard and position her shoulders/elbows properly so that she can complete her typing assignments?  Do I give her an F in science when her knees, hips, and back hurt too much for her to stand and perform experiments?  Does she just never do things with friends because she is in too much pain to get out of her chair?

This has gone on too long and is getting progressively worse.  Last weekend she was in tear because the pain, even after adding acetaminophen to her NSAID, was intolerable.

Yesterday I finally phoned the rheumatology nurse line and asked if there’s anything we can do to step up her treatment plan, or – at the least – do something temporary to relieve her pain so that she can get back to her exercises.

The nurse finally called back.  My daughter now has a referral to a pain clinic.  Are you kidding me??!!!  A pain clinic?!!!  She does not need counseling or pain medicine.  She already has an exercise plan – she’s in too much pain to do it.

Everything I’ve read says that the prognosis of enthesitis related arthritis is related to age of onset.  Maybe the prognosis would be better if the disease was treated more aggressively!  NSAIDs do not qualify as aggressive treatment.

Sulfasalazine is supposed to be very effective in treating the spondyloarthropathies.  Methotrexate is pretty scary to think about giving my sixteen year old, but it would be better than having her unable to function.  Even a quick steroid taper has potential.

I recognize that I have not been to medical school.  There are many factors that I might not be aware of or understand.  However, it would not be that difficult for the doctor to explain the indications for stepping up treatment.  If my daughter will be unable to function then she should quit dreaming of earning her DPT.

For the life of me, I do not understand why my daughter’s rheumatologist won’t try something else.

The Dilemma

“Mommy, would you come here?” calls my son.

As I trudge into his room, as I seem to do every night after he’s been tucked into bed, I speculate.  If I were a gambler, I’d bet that a joint hurts.  Which will it be tonight?

Sure enough, when I arrive in his room, I hear him declare, “My knee hurts.”  I turn on the light, examine the joint in question, and ask the usual questions:  When did it start hurting? Do you know the cause? Does anything make it better? Does anything make it worse? Does anything else hurt?

Tonight we’re lucky. It’s only one knee.  Nothing out of the ordinary hurts, just the usual stuff.  “The usual stuff” being his ankles and a headache, plus he doesn’t feel good.  Sometimes it’s his back, often it’s both wrists or his heels.  This kid has more aches and pains than his grandmothers.

It’s not stalling tactics; he isn’t trying to stay up later.  It’s almost as if he can keep things in the background while he’s up and running around, but once he settles into bed, the pain starts screaming for attention.

Dejected, I wonder what to do.  Is there really any point in taking him to see our family physician?  I anticipate x-rays of the joint-du-joir, an expense that would yield no diagnosis of the problem.  Next, a blood draw that might or might not show any abnormalities.  Then, I expect some deliberating… is this nothing, or is this ERA… and eventually a referral to a pediatric rheumatologist.  More poking and prodding and time spent.  Eventually we’d get an NSAID prescription.  I’m inclined to skip all the expensive, time-consuming diagnostic process and just give the kid OTC children’s ibuprofen.

Sometimes doctors give a medicine to see if it will help. I can certainly do that on my own without spending a couple thousand dollars.  If the ibu works, problem solved.  If it doesn’t help, then at least that provides more data for when I eventually do take him to the doctor.