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.

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10 thoughts on “Early, Aggressive Treatment

  1. Boy how frustrating! What does he say when you ask him? Is it possible to change doctors or is he the only one available in the area? I can’t imagine the frustration you feel watching one of your children deal with this. I hope this doctor begins to realize that a child in serious, true pain needs more aggressive treatment.

  2. I can’t imagine how frustrated and upset you both are! I agree with Mary — look for another doctor if one is available. I can’t imagine sending a child to a pain clinic without also trying to treat the cause of the issue,

  3. I’ll add my voice to the chorus, too, Socks. It sounds like your daughter’s rheumatologist isn’t treating her disease properly–your argument that DMARDs would be better than just NSAIDs is spot on. I hope she’ll be able to change doctors soon.

  4. Thank you, friends.
    Very non-confrontationally (at least I tried), I asked why the treatment plan is to stick with NSAIDs and no life, instead of stepping things up. I don’t want my daughter on mtx or some of those meds with scary side-effect profiles. However, weighing cost vs benefit, I’d rather have her taking something that gives her back a life than just sitting here frustrated that it hurts to exist and hurts even more to move. The nurse called back just before closing time and said that since the doctor has never seen swelling, it’s appropriate to stick with NSAIDs. Unless the doctor sees inflammation, no stepping things up. At least now I know. I completely disagree; her first ESR was 37 which means there’s obviously inflammation somewhere.

    The plan now is to discuss the situation with our family doctor to see if he has any ideas. We’ll also talk with my rheumatologist to see if she’s willing to treat a teenager, and if she’s willing to be a bit more aggressive.

    If I could design a treatment plan, I’d start the kid on ssz and pred, and taper off the pred about the time the ssz should kick in. To me, it would be worth a short challenge to see if it helps. If it doesn’t help, then ditch that and try something else. Then again, I’m just a patient with no medical training. Maybe that’s a bad idea. We have to do something, though.

  5. Oh, forgot to mention, every pediatric rheumatologist in the state is at Children’s. The doctor is willing to see my daughter before her next scheduled appointment, however the nurse checked the schedule and there are no openings. We are welcome to see someone else at Children’s, but have decided that probably is not our best option at this point. Punt.

  6. WarmSocks,

    I can’t tell you how much it breaks my heart to hear that your daughter is suffering and not receiving proper care. :( I know you are thinking about what might truly help her in the way of medication. So, just wanted to let you know that I was one of the lucky ones to experience relief with sulfasalazine and have not experienced any side effects so far. My disease also falls in the spondyloarthropathies category. Have been on it several months now. Please consider reading testimonials for anitbiotics as well. There are several stories of children getting their lives back http://www.roadback.org/index.cfm?fuseaction=community.sub&subgroup_id=6&SR=46. It is listed as a DMARD on the American College of Rheumatology site. Love and hugs, Kelli

  7. I have a very similar story to your daughter, I was diagnosed only 3 months ago after 7 years of pain. I have been on NSAIDs for a year, and I am better than my low point but as you said that doesn’t take much. I really like your perspective. Its just so frustrating that I can opt to get steroids injected into one joint usually, but treating everything seems to be an issue, I really want someone to step up my treatment. I was also told that Enthesitis doesn’t cause the amount of pain I have so I must also have something called Amplified Musculoskeletal Pain Syndrome and the treatment for that is exercise. While at first I was fine with both diagnosis not I am afraid no one will treat the Enthesitis because they will say my pain is from AMPS which is a nerve problem.

    • That is incredibly frustrating. It drives me crazy that doctors can say, “this shouldn’t hurt as much as you say it does, therefore there’s something else going on.” I propose that enthesitis can be much more painful than doctors realize.

      It is true, however, that strengthening muscles surrounding a joint can help. I don’t believe it’s generic “exercise” that’s helpful, but a carefully designed strengthening/toning regime that works best. I hope you are doing at least a little bit better now.

  8. I’m just catching up with all this – haven’t had much of a chance to read blogs lately – this sounds awful! I wish I had a sensible suggestion to make but they’ve all been made above and clearly you’re on to everything possible. It’s just maddening that you can’t even change doctor easily and they’re all in the same place anyway. Any way of looking up the doctors and seeing what their preferred treatments and things are in any way? Then you could maybe pick one that sounds sensible!!

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